Monday, July 30, 2012

Thoughts about depression

I don't know if depression is the right word for what I often feel. It's not depression of the kind that comes out of no-where. It's depression that sneaks in quietly, evaluates the facts and settles in for a long stay, never completely taking me over but eating away at the edges of my mind. A quick search for "autism" "mothers" and "depression" turned up this article. It's 5 years old, but not much has changed in the world of depressed mothers. I like it very much, because it politely says what I often think---it's depressing to be the mother of an autistic child because it's just plain a very, very hard life with no relief in site. It's not some complicated to figure out thing, as the study mentioned in the beginning of the article thought. It's what the author of the article says---the social isolation that having an autistic child breeds, the lack of sleep, the monetary problems from not being able to work or from medications or treatments, the battles to get your child what they need, and most of all, I think, the future not having relief in site---the knowing that until the day I die, I will be responsible for Janey.

I'd add a few to the article---the tension that the autistic child creates in a household, that leads to everyone being on edge and more prone to fighting, the endless cleaning up of the messes the autistic child makes, the media finding a new way every day to point out how you inadvertently caused your child to be autistic, the few unkind strangers who make going out in public a minefield, the sadness from not ever being able to give your other children enough time, the worry about what is happening to your non-verbal child when you aren't with them...I probably could go on for a good long while.

And so I don't think it's strictly right to call what other parents and I often feel "depression". I call it more...a logical reaction. Tonight it is feeling that way, anyway. Back to trying to be upbeat next time, I promise.

Sunday, July 29, 2012

Old Country Buffet night out

I am not a huge fan of Old Country Buffet, but we have discovered that Janey is. We went there a few weeks ago, and she had a wonderful time. Last night, we were engaged in one of our favorite family pasttimes---driving around having an extended argument about where we should eat. With strong individual tastes, a limited budget and a family full of people unafraid to express their opinions as vehemently as possible, it's a good time. And for the first time, Janey got truly in on the fun. We were about to go into 5 Guys, the burger chain, and she completely freaked out. That isn't new---she often does that when we go out places. I was ready to pack it in and go home, or maybe just get a little McDonalds, but we decided to sit in the car for a bit and talk to Janey. We asked her "Where do you WANT to eat?" I think we gave it a try because she was in an extremely good mood right up until we started into the 5 Guys, and so we had a feeling it wasn't just general crankiness. It took a lot of asking, and wording things differently, but eventually she said "I want to go to the buffet!" Of course, we weren't sure if she was just talking to shut us up, or not really meaning what she said, but we headed to the buffet. There was a huge line, and I almost just gave up again, but Tony asked her "Do you want to wait in the long line or go home?" and she said strongly "Wait in the long line!" And she did---for the most part, very patiently, for about 20 minutes. And when we finally got seated, she was as happy as a clam---eating a lot, all smiles, just seeming very pleased that we understood her and she was where she wanted to be.

There's a lot about Old Country that works for her. You get the food right away, it works for people with odd tastes, it's a loud and happy environment, and, well, to put it delicately, being a little odd doesn't exactly set you apart there. If aliens landed on earth, and they looked like some of the people in that bar scene in Star Wars, they could go eat at OCB and fit right in. Janey was so happy she spent a lot of time making her loud happy noise, the long drawn out "AHHHHHHHH!" and although she got some looks, we gave some looks to others as good as we got.

Tony and I were talking about how we can take Janey back to the Old Country for her birthday. It's good to know a place that's truly a treat for her, even if it's not our choice. It's great we are able to include her in the family tradition of advocating for favorite eateries and dissing everyone else's as loudly as possible. It's fun to have her be just one of us.

Wednesday, July 25, 2012

Misguided remarks

I'm not going to try to demonize Joe Scarborough, who made comments saying that the shooter in Aurora sounded like he was on the autistic spectrum, more specifically someone with Aspergers. I know he has a son with Aspergers himself, and I don't think he meant the comments to be cruel or hurtful. But they were very misguided. I don't think he must really understand what at least the vast majority of people with autism are like.


On a very basic level, the reason I don't think someone on the spectrum could or would commit a heinous mass murder is because they quite simply are not motivated by much of anything that involves other people. They would not have the kind of hatred that would lead someone to kill others. That kind of sick hatred is in a very twisted way a social feeling. It's a crazy social feeling, but it's a social feeling. I don't think Janey would, even if she were higher functioning, have enough interest in people she didn't know to want to hurt them. If you go to Janey's summer school and see the hundred or so autistic kids there, you will notice very, very little if any fighting or arguing or teasing or annoying of kids toward each other. The kids do their own thing. Sometimes they imitate each other, and some do show affection to each other, mostly higher functioning girls. But I don't see meanness, or even mild purposeful annoying. That's not in their make-up.

I am not saying that someone with autism or Aspegers could never kill anyone. I think if they ever did, it would be an isolated event, probably having something to do with a special interest. This sounds like it might have been the case in an awful situation in our state, where a boy with Aspergers killed a classmate at his school. He was fascinated with CSI type shows and criminality, and he took it to a criminal level. He is in prison, and he should be. But that is nothing like the Aurora killings.


I am sickened by the Aurora case. I won't write more about it, because it's outside the scope of this blog. But I do want people to understand that it was not an act of someone with any kind of autism. I would be willing to bet the crime rate for people with autism is the lowest of any demographic you could think of. And Joe Scarborough should have known better than to say what he did.

Tuesday, July 24, 2012

Kind people

There are so many kind, caring people out there. Sometimes, when it gets tough with Janey, I forget that. I think about the few people who make mean comments or give nasty looks, but there are so many more people that are nicer than they have to be.

This thought was prompted by my trip to the post office with Janey this afternoon. I should have gone while she was in summer school, but I didn't make it. So I took her after school, and she was not happy. She was tired, hot, just not in a post office mood, I guess. I tried bribing her with donuts if she could be good. And she tried. She really tried. She kept saying to herself "If you are good, you can have a donut!" but then crying hysterically. And as I tried to hurriedly get my posting done, she suddenly hugged the teenager behind us in line, a violent, tight hug, while she cried her eyes out. I quickly tried to get her away, but the girl said "It's fine! It's okay! She is so sweet! How old is she?" I said almost 8, and as she looked a little surprised, I said "She is autistic" The girl said "Oh! Just like my nephew!" and kept holding onto Janey, despite Janey's increasingly tight hugging and loud crying. I tried to comfort Janey, reminding her about the donut, and the clerk said "Oh, she's doing the best she can! She's tired! It's hard for all of us to be good!" and then he pulled out a wedding picture to show me his niece, who was the flower girl and also autistic. Those two fine people, so different in age and appearance and background, both made me feel so hopeful about the human race. As I left, I heard the clerk telling the teenager what a fine person she was, how nice she had been. My eyes were filled with tears.

I have to remember people like that when things get hard. People, I truly believe, are mostly good. They want to be kind, they want to do the right thing. Not everyone, but a good deal of people. And I am very grateful that is the case.

Sunday, July 22, 2012

Crying, Depression

Janey has had a tough 4 days or so. She has been doing a lot of crying---not all day long crying, but crying bouts that last hours. She has been waking up crying and going to sleep crying, with some calm times and some crying times in-between. I have no idea why. I rarely do. Summer school is going well, things are pretty calm at home, but still, she cries. The best way we deal with it is get a lot of food into her fast. It often seems hunger related. Or get her active--take her out someplace, although that is not always possible at 6am or 10pm.

And I realize that when she cries, I get depressed. I get hopeless feeling. I can't deal with it well at all. I just get a feeling that there is no end, no cure, nothing I can do to fix anything. As I've said before, it's like colic in a baby. You can't make them happy. You can't console them. You just have to last it out. But with Janey, is the lasting it out going to be the rest of my life? On depressed days, I don't see a way it won't be. She makes small bits of progress, but if I am honest with myself, not big bits. She knows a little more academically, but her ABA specialist has seen that some of it has been lost this summer, even with his great continued ABA. I don't know how next year will be in school. She is not truly talking much more than years ago. There are bits and pieces here and there, and she is understanding more, but her speech is still so limited.

And of course I might not be seeing things clearly. That is what depression does. I don't know if this is really what people mean by depression. Somehow I picture depression as a wave that hits you for no reason. There is a reason here. But it seems to affect me like people say depression affects them. I slow down. I can't think quickly how to make things better. I feel trapped, hopeless. I would do anything to make things happier for Janey, if there was anything I could do, but most days, there isn't. It's like a weather system. It sweeps in and then sweeps out. You have to ride it out. Hurricane Janey.

Friday, July 20, 2012

Endless morning

Janey woke this morning in a mood. She has been awake for 90 minutes, and those have been 90 minutes in, well, I'll just say it, hell. Right now she is momentarily watching a video, but I stop writing every 30 seconds or so to check that is still the case. If I don't, she will dump everything she can find on the floor, she will break whatever she can get her hands on, she will scream and yell and hit.

The problem that started it all is a lack of raisins. Janey thought there were raisins in a place we've kept them before, up high so she doesn't just dump them all out and create sticky little places all over the house. We were, however, out of raisins. She did not accept that fact, and stood looking up where they should be, screaming "I WANT RAISINS" for a good long time. I should have just left it at that---at least it kept her occupied. But she does need breakfast, so I made oatmeal. She ate a bit, threw a bit on the floor, and dumped the rest in the sink, which is better than the floor, but we don't have a garbage disposal, so I had to use a paper towel to get it out and throw it away. In the confusion, I had forgotten to tie up the fridge, which we have to do with an increasingly complex system, as Janey has figured out all the rest. So she reached in and found yogurt, opened it and then dumped it. She was supposedly in time out after that, but of course I'm cleaning up the yogurt, and without someone sitting there keeping her in time out, it doesn't work.

Then she asked for a video, which I am sure all of you are thinking "Why in heck should that girl get a video this morning?" Well, it comes down to my futile hope to get able to drink my coffee. Too big a dream, but hey, I'm a dreamer. I took a few swallows of it before something in the video displeased her and she freaked out screaming. That screaming took on the form of saying "WAAAAA! WAAAAA!" in a very fake way. I was about broken at that point. She asked for another video, Baby Newton. She had an idea which cassette it was, but she was wrong. However, when I tried to put on the right cassette, she was not pleased. So I put on the wrong one, knowing it would not be a happy scene, and of course it wasn't. At that point, I just yelled at her, never a constructive thing to do, but I would guess a saint would not have been able to resist by then. I yelled she would watch that video or nothing. So she is, although I've gotten up 10 times to intercede in potential disasters, and to give in and give her one of her breakfasts of choice, a bowl of ketchup.

What's the point here? I don't know. The point I guess is that caring for a low functioning and emotionally volatile autism child is not easy. I look at myself in the mirror and I am aging fast. I live in a constant state of stress. The good times help, but when mornings like this come, it's not easy. I think how for some parents, this might be the worst morning they ever had with their kids, but for me, it's not even in the top 50.

Maybe the point is that it's good to have a place to rant, and you, my dear readers, are doing me a favor by listening. Thanks.

Thursday, July 19, 2012

Understanding Speech

One of the somewhat quiet bits of progress Janey has made in the last year or so is her big increase in understanding what we say. Previously, she probably talked more than she understood, had better expressive language than receptive, which is a rare setup I think mostly seen in autistic kids who are verbal but not really usefully verbal---kids like Janey that repeat a lot and use a lot of delayed echolalia. But lately, she is understanding much more, which can be seen by how she follows directions (when she wants to). For example, this morning she wanted to watch a certain episode of The Backyardigans. She brought me the Wii remote (as we watch it on Netflix through the Wii). That remote had dead batteries, and so I said "Bring me the other remote---this one isn't working". I say things like that often not expecting any response. It's part of just keeping on talking, giving her as much speech to hear as I can. But today, she immediately went over and found the other remote and brought it to me. I was very happy.

We have to be careful with this increased understanding at times. She listens to everything we say, and can get upset by things she hears and perhaps only half understands. If we mention dogs, or loud noises or other things that scare her, not in any context of something scary, she might hear the word and get upset. Or if we casually discuss ideas for dinner, and something like "Burger King" comes up, she is putting on her shoes and ready to head out for a chicken nugget treat. It's wonderful she understands like that, but hard too, in that she partially understands often, and I can't imagine what a confusing world that must create. My analogy is when Tony's parents were alive, and spoke in Italian dialect. I got so I could understand about half of it, so I could kind of follow a conversation, but not really. It felt very scary and lonely at times---better than not understanding at all, but in some ways not, because I could understand enough sometimes to misunderstand.

But it's progress. It's wonderful to be able to ask Janey to do little things like bring me the phone or go see Daddy and have her actually do what I say. It's a very nice step forward.

Tuesday, July 17, 2012

Ups, Downs, All Arounds


Knock on wood, in many ways this summer is going well. Janey has been happy for the most part, and we have had some good times as a family---times where we actually all enjoyed ourselves without one of us having to constantly be keeping Janey happy. She was happy along with us. We went to the beach, we went to Janey's new favorite restaurant Old Country Buffet (which used to have edible food, but I guess they can't afford it any more, but Janey loved the unlimited bacon bits and Chinese dry noodles), we had some times just playing with the cats and laughing all together.

The biggest shocker is Janey using the potty MUCH MORE! Lately, it's like all of a sudden she figured out how to actually sit down and urinate. She could always hold in the pee, but didn't seem to know how to release it when she wanted to. As I kind of always figured it would go, she just does it on her own terms---walks into the bathroom and uses the toilet like she's been doing it all along. In the last 4 days, she's probably peed in the potty 10 times, which beats her previous lifetime record by about double. I hope it keeps up. I wonder how it will be when school starts, as she is not usually open to suggestions as to when to go. She just walks in and goes when she needs to, and I doubt she'll have an easy time telling teachers when she wants to go. But that's a worry I'd have loved to have a year ago.

Summer school seems to be going very well! I've continued my incredibly lucky streak with good teachers, and her teacher and the aides in her room seem great. Janey is happy to go each day, and can barely bring herself to look at me long enough to say goodbye when I leave.

The downs are mainly the couple hours after school, and before Tony gets home. The boys are in summer programs and so aren't there, and I am just plain worn out, from heat or not sleeping or other things. And Janey is in rare mischief mode. The other day was a classic. She took a jar of Cherry Kool-Aid, almost brand new, and proceeded to try to make some Kool-Aid for herself by pouring it into (dirty) glasses and pouring soda into the glasses, in the brief time between when I looked up to see her happily watching TV and when I looked up a minute later to not see her. I ran into the kitchen and was met with a scene that looked like a crime scene---gloppy wet piles of Kool-Aid powder everywhere, Janey covered from head to toe. She is incredibly quick. I did a few experiments lately with faking looking away, and she is purposeful---she runs straight to what she wants to get at, like the liquid soap in the bathroom or her brother's Nintendo or the cat food, or just the sink, to turn on the water full blast, or the fridge to dump things out. It's incredible. If it wasn't so hard to deal with, it would actually be impressive. I try so hard to keep her engaged, but she is restless---even a TV show or video or book or toy she likes only holds her attention for a little bit before she has to run around a little. I think part of that is just her and not the autism---Tony is like that too, without the mischief.

The all-around is just life going on. I am making a conscious effort to spend all the time I can with the boys. It is like a clock is ticking, and I know 3 years from now, they will both be gone at college (most likely). Some of the family times all together are feeling poignant. I wish I could freeze time sometimes, and enjoy this summer and the times we are all laughing and happy together forever. I know the boys will not be going away for good, but it's never quite the same. And so I want to make sure to give all my kids the attention and love and fun they deserve. And gradually, we are learning how to have that with Janey as a full-fledged participant.

Saturday, July 14, 2012

Autism and Toys --- Some Thoughts

I've written before about how hard it is to find toys that engage Janey. It's something that has frustrated me for years. She has little interest in most toys, and is unable to use others, due to the difficulty of operating them or the small and dangerous pieces she might put in her mouth, or just due to her love of tossing things all over the floor and losing them. We are left with few toys that work for her, and this is upsetting to me, as I am a big believer in toys and how important they are for kids. I've figured out a few things that work for us over the years, and here are a few ideas...

1. Fidget toys. These are usually things actually designed for people to have at their desks in offices, and to play around with as a way to fidget. Not all of these are at all suitable, of course, like things with magnets or breakable ones, but lots are---mushy figures you can push in, Tangles that can be turned in all directions, Kushie type toys, toys with water inside you can move from side to side to see the waves move, things like that. I have gotten a lot of these from office supply sites.

2. Baby toys. I used to resist these, wanting Janey to have "age-appropriate" toys, but lately I've kind of given up on that. Baby toys are pretty cool these days! They have all kinds of textures, they often make noise or play music, they are non-breakable and can't be eaten---in a lot of ways, they are perfect for Janey. She is most interested in electronic ones, like V-Tech or LeapFrog toys, and I've had good luck finding them used.

3. Water toys. Janey, like so many kids with autism, loves water. She loves being in the bath or the wading pool or any kind of swimming. Anything that can stand water is a great toy for her. She loves to toss things in water and see what happens, so it's great to find toys that allow that.

4. Balls. Janey loves to kick or throw balls. She is getting better at it! I try to find balls that are safe for the house somewhat, so she can use them all year round.

5. Stuffed Animals. This is a new category for Janey, because I have a new approach to them. I'd never buy one new unless it was a very special circumstance, but at the thrift store I like, they sell big bags stuffed VERY full of assorted stuffed animals, for usually $4. They have about 15 toys in them! I take these in the car, and hand one to Janey at the beginning of almost every drive. She likes holding them, feeling the textures and exploring them, and every now and then she finds one she gets attached to, like recently a monkey and an elephant. I think of them as disposable, as it's impossible to keep her from sometimes wrecking them or losing them, but at that price, it's okay.

6. Bubbles. Janey has learned how to blow bubbles herself, although you have to watch her pretty carefully so she doesn't spill the whole jar of them the minute she picks them up. She also loves bubbles blown for her.

There are some toys you always see in lists of "Best Toys for Autism" that just don't cut it for Janey. A lot of these are toys that are for higher functioning kids with autism, like Geosafari toys or complicated train sets. Puzzles don't work well, just because she will so often toss the pieces, and I don't have the organizational skills to keep track of them well. Playdoh WOULD be great, as she loves it, but she loves to eat it as much as play with it, and although we've given it second and third and fourth chances, she can't resist. Although I think she likes to draw and paint at school, at home, she doesn't seem to care for it. And she has never shown much interest at all in dolls, which is probably one of my biggest areas of sadness about her. It's my dream, not hers, to have a daughter that loved dolls as I did.

Of course, one of her favorite "toys" is her iPad, but that's a different category I'll write about soon!

Thursday, July 12, 2012

Facebook Scrabble and the House of Cards

Scrabble on Facebook hasn't been working for a few days. And you might well ask---so what? You might wonder why I don't just pick up a board and play a live person, as my sister asked and as I'm sure other people wonder. Why am I so upset an on-line game isn't working?

Well, it's all part of the house of cards. Let's just think about what real live Scrabble would involve. I'd need to find someone who wanted to play. I would need to go to their house, or have them come here. I'd have to find a time when someone else was watching Janey. It would have to be a good solid block of time. Even if I could do any of this, the chance of finding someone I could play at about my level (which I would call intermediate) would be not great, and even in the best scenerio, I'd get to play them about once a week, maybe.

Now think about on-line Scrabble. I have about 6 people I can play with. I can play a turn any time I have a minute. I can watch Janey while playing, or wait until she's being watched. I can play in the middle of the night, if I wake up and can't sleep. I can chat with the people I'm playing with, through the chat box in the application. I get a little boost many times a day, a chance to use my brain, to do something that has absolutely nothing to do with autism. I get a break at my convenience. I get a little socialization. I truly enjoy the game. It's sometimes I've come to depend on, to need.

And it's all part of the house of cards. People might laugh at someone being upset that a stupid Facebook application doesn't work, but when you are a full time caregiver for someone like Janey, when you cannot simply go out and socialize when you feel like it, when so much of your life involves cleaning up diapers and keeping a child from tossing food around or crying hysterically for hours, when the best chance at entertainment you often get is re-watching an episode of Kipper you've seen 100 times, well, the little things like Scrabble take on a huge significance in your life, and not having them might be the difference between sanity and not.

Wednesday, July 11, 2012

Future visions

My leg is much better today, although still a bit of a mystery injury. I was able to drive Janey to and from summertime school, but by the time I got back from picking her up, the pain was hitting a bit. So I got an brief try of what it would be like to care for Janey while unable to move around well. In short, I really can't. I managed by letting her do most anything that wouldn't hurt her, which included eating bites of most of a box of donuts and throwing the rest on the floor, pouring herself some seltzer and getting much of it on the floor and then having me use the remote to change Netflix shows about every 2 minutes to keep her happy. The boys were both at their summer programs and Tony was at work, and I had about 2 hours to fill. She didn't try anything dangerous---there isn't much dangerous she can get at in the house, as we have childproofed pretty heavily---no burners on the stove, anything potentially harmful on high shelves or locked. She is easily able to open the bungle cords we have used to keep the fridge closed, though, so basically if I can't get to her, she will eat what she feels like eating---not dangerous, but odd, like ketchup, spaghetti sauce, mayonnaise, those stale breads that come with Chinese food, etc. Those are the reasons I keep on my toes always around her. I could see her at all times, and of course I would have pushed through the pain had she tried to do anything that could hurt her, but the house was a mess when Tony and the boys got home (not that it isn't always a mess, but more of one!)

And that is what triggered future visions. I'm not getting younger. I hope I'll be in good shape for many years to come, and I hope Janey gets easier. But what if she doesn't, and what if I get a worse injury? What if I got very sick? What if I, well, was no longer around? What happens to the kids that never grow up? How does it work? If there are really that many kids with autism out there, I can't see how it will be possible for them to have enough adult housing for all of them. There are going to be a lot of adults with autism living at home with aging parents. That's the big issue that is going to have to be tackled in the next 20 years in the world of autism.

So for now, I'll just hope my leg gets all better soon. I'll say a huge thank you to summer school, and to my husband and boys for all they do. And we'll manage, for now.

Tuesday, July 10, 2012

House of Cards

The last few days have reminded me that even when things seem to be going smoothly with Janey, it's all a house of cards. Monday, it felt like the start of a week where everything was falling into place. Janey went to summertime school, Freddy and William to summer programs they are in. I got a lot done, paid bills, went to the library, did laundry. The only issue was a slight pain I was feeling in my right upper leg. However, by evening, that pain was not slight, but horrible---very, very severe pain. I think I pulled a muscle when a pile of library books started to fall and I righted them by twisting around, while holding Janey's hand and her backpack and my pocketbook, taking her to the car in the morning. I couldn't sleep last night, despite everything I tried for the pain, and this morning it was obvious there was no way I could drive Janey to school. That left a problem. I could of course keep her home, but that would not let me keep my leg up. There is no sitting by relaxing when caring for Janey. You have to be ready to jump up constantly. The boys had their own places to be. And so Tony needed to stay home. It's not easy for him to miss work at his current job, but there was really no other alternative.

My leg is already feeling better, thanks to rest and ice and heat all day. But I kept reflecting on how easily it all falls apart. Of course, that's not unique to a family with an autistic child, but I do think it makes it harder. If Janey were a "normal" 7 year old, I could have kept her home and probably cared for my leg too. Or I could have called a friend to see if she could go to their house, or they could drive her. But with Janey, something like that is not a last minute thing. There are few people that can watch her, and even for those who can, they need lead time, instructions. They need to be able to help dress her, they need to know what she is prone to doing, they need to understand the huge need for handholding and constant vigilance. I can't call someone on 10 minutes notice, I couldn't take care of her myself. So it's Tony. But what if Tony was away? What if both of us got hurt, or sick? What if Tony simply couldn't take a day off? What if my leg was still bad tonight, and we needed help all week?

We'd work it out, someone. The boys would help, family would help, friends would help. But it would be hard for everyone, and more than I want to ask of people, and more than they could do for an extended time. It's truly a house of cards, with a breeze or a careless hand or a moment of not paying attention causing it all to potentially fall apart. It's scary.

Saturday, July 7, 2012

The Noise

When Janey's isn't talking or echolaliaing or crying or laughing, she is often making a sound. It's a very hard sound to describe. It sounds like a long, drawn-out "AAAAAAAAAAAHHHHHHHHHHH" kind of noise, not always in all caps loudness, but often. It's a background kind of noise, one that seems to just mean "I'm still here. I'm wandering around or watching a video or just hanging out, and I need to make sound" I have to admit---I hate it. I truly hate it. It annoys me no end. I know it's part of Janey, part of her autism, and certainly not something she is doing to annoy me or anyone else. I don't let her know I hate it, as I am almost certain she has no idea she makes it. I am sure she makes it more often than I even notice, because after a while, it's just part of the background house sound, but when I do notice it, when I am trying to hear something else or rest or just let myself think, it sticks into my head like a dagger. I don't even know if other members of my family are annoyed with it---I don't think we've ever talked about it, and we are talkers. It's just so much part of the background static that it hardly bears mentioning, but mentioning it I am. For no productive reason, I guess.

Friday, July 6, 2012

The Bystander's Guide to Reacting to Autism

Let's say you know next to nothing about autism. You are out in public someplace, and you see a kid (or an adult) acting very strangely. Perhaps they are crying for no reason you can see, or flapping their arms around, or laughing over nothing, or repeating the same phrase over and over in the same tone, or obsessively talking about a topic, or just plain looking odd and unconnected, or staring at their hands, or any number of other behaviors that just look off. How should you react? Here's your handy guide!

Your first option, and probably the best one----if the child isn't affecting you in any way, just ignore them. You don't have to react at all. This is the option most people choose, and it's fine.

However, if you feel you must or if you want to react, one handy trick is to find the parent and to smile at them. Smile that understanding smile that says "Hey, we've all been there" or perhaps "I see your interesting and intriguing child" or even "I can tell your child is autistic, and I just want to give you a smile of support". Any of those smiles, those looks, will generally be welcomed by a parent or caregiver.

But what if the child is bothering you or annoying you? Well, first of all, judge how long you'll really have to be in their presence. If you are on a subway, or in a store, or grabbing some takeout, or in a park, are you really going to have to be around that child more than a few minutes? Can you find it in yourself to think "yes, they are being a little annoying, but I know their parents are doing the best they can, and they live with that child all the time. They are dealing with a disability, and what would I have them do? Hide the child away?" Think those things, and then go back to idea #1 or idea #2. Ignore them, or be supportive and smile.

What if you have to be with the child for longer? Well, then, think about whether the parents have any choice about bringing their child to be in your presence. Are you in a doctor's waiting room, and they are too? Or are you at a playground with your children, as they are with theirs? Then ask yourself---what if the child had a physical deformity that upset you to see? Would you say "Why would they force me to be in the presence of that child? They should have kept them hidden away. They shouldn't have taken them for medical care or to a public recreation area" Then change the words physical deformity for mental disability, and think how you think about yourself for thinking that way.

Now let's go over the rarest of situations. You are at someplace you paid to be at, trying to enjoy yourself. You are at a restaurant, or a movie, or a museum. There is an autistic child there, screaming or laughing or talking loudly. Their parents don't seem to be succeeding in quieting them. They are bothering you, and you feel like your outing, for which you paid good money, is being ruined. You feel like giving those parents a piece of your mind, or at least asking them to leave.

This is where it gets tricky. But for a minute, put yourself in the shoes of the parents. Perhaps they haven't eaten out as a family for years. They have decided to give it one more try. It isn't going well. They have paid for their meal, and they are going to do their best to get through it. Perhaps the mother is aching to take the child out to the car, to once again sit outside so the rest of the family can enjoy the meal and so strangers aren't annoyed. Or maybe it's the museum. The child loves whatever the museum shows, but the parents have resisted taking them there, knowing that their behavior might bother others. Finally, one day, they give it a try, bracing themselves for the situation.

There's no good answer here. The kind thing to do, the compassionate thing, would be to go way back to the first two ideas. Ignore the child, or smile and support the parent. Or go ahead. Complain. It isn't fair to you. You'll make the parents extremely hurt, or extremely angry. They will learn their lesson. They will learn to keep that child home. But keep a little statistic in mind. They say one in 88 children is autistic. You might be the next one with autistic child. Or grandchild. And what goes around, comes around.

I'll end with a thank you, a thank you to the probably 95% of people who ignore or smile. Thank you for giving me the courage to give Janey a full life. To the 5%, I am sorry. I'm sorry if my child has disturbed you. I can sincerely say I hope we don't cross your path again.

Thursday, July 5, 2012

Summertime School

Janey is now going to what we call Summertime School, and what is officially called Extended School Year, or ESY. I was reading a little about the laws pertaining to ESY. It's required to be offered to kids at substantial risk of regressing during the summer, which is certainly the case with Janey. We are lucky in Boston that it's offered for 6 weeks, 5 days a week, 5 hours a day. The law doesn't require that much, and I know from talking to people in other parts of the country that some places have only a few weeks of it. It's going well so far. I like Janey's teacher, and she also gets to see her ABA specialist, the same one from the school year, and a few kids from her school are also in her class. Janey is eager to go each day. I think she truly needs the structure. And I know I need the break. The thought of a summer without some program, as was the case until last year, is very hard to imagine.

Although I haven't seen Janey in her classroom environment, it's interesting to see the kids when I drop her off or pick her up. All the kids in her program (as far as I know) are autistic. It's like seeing a world where autism is the norm. And it's making me realize that I think Janey is tougher than most kids with autism, at least in terms of being emotional and moody. The first day, it took a long time to get all the buses there, and the kids had to wait outside a long time. Janey was actually very good that day, but I was figuring a lot of kids would have a hard time, and I didn't really see that. Most were quiet, most didn't seem to answer when asked questions, but I heard only a few crying. So far, I haven't seen a lot of kids trying to run away, or making loud strange noises, or yelling things, all things that Janey does regularly. That's not to say they don't, but I thought seeing around a 100 autistic kids at once, you'd see a lot of it, and I haven't. That was a little eye-opening. There is hardly ever a moment when we can say Janey is truly being relaxed and even-tempered. She is often happy, but a loud happy, she is often sad, and a loud sad. Sometimes she does zone out, but not long enough so you can relax much.

Aside from summer school, our summer has been okay. We are keeping Janey busy, and so keeping ourselves sane. Regular school starts in about 2 months. Not that I'm counting.


Tuesday, July 3, 2012

Two views of a day


View one

We went to New Hampshire to a friend's lake house. Janey cried a good deal of the trip up. Once we were there, five little kids, nieces and nephews of the owner, came over to visit. They were ages 2-8. All of them, including the 2 year old, talked far better than Janey, of course. Janey paid them little attention, although they were very kind to her. We spent much of the day trying to keep Janey from crying fits, fits that confused the kids. I got to see the mother of my old boyfriend, which was great, but Janey, while sitting on her lap, peed all over her. Janey several times tossed items around the yard into the water, making people have to get in and drag them out. During supper, she kept eating food off the other kids' plates. The ride home featured Janey screaming for hours. A long day.

View two

We went to New Hampshire to a friend's lake house. Janey was thrilled to be on the lake. She adored the boat that was there, and spent a long time sitting on it even before she got to go for a boat ride. When she did get the ride, she was happy beyond words... (see picture!) The kids there were all sweet and understanding of Janey. One girl was the same age as her, and treated her like a friend, even saying she wanted Janey to come over soon for a playdate. Janey swam, played outside, ate well and had a blast. We all enjoyed the day a lot.


Well, I choose View Two. But I realize how much my mind edits things. The boys remember far more of View One, especially the screaming in the car. The other people there probably remember View One too. I wonder how the kids see it? They were quite confused by Janey, especially the girl her age. They kept asking "But WHY is she crying? Why doesn't she answer us? Does she do math in school?" They had never met someone with autism before. It was a baptism in fire. But I still will remember View Two most, especially Janey's bliss one the boat. That was me at 7. I lived for time on the ocean in my grandfather's boat. I've always loved the water, for as long as I can remember. So I pick to see that, not the screaming or the lack of toilet training or the non-talking. I pick the part I love.