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.

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.

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.

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.

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.

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!

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.