Low Optimism Day

Some days lately I can feel upbeat, but today was not one of them. If you aren't in the mood for a depressed rambling entry, you might want to skip this one.

Janey was home today and it was just such an endless depressing day. She will be back in school tomorrow, but even one day is hard. She spent the day in three ways---begging for videos which she will watch for a minute or two and then cry about or ask for another different one, crying for no reason I can figure out and laughing hysterically for no reason I can figure out. I guess there were a few food requests in there too. I tried to do so many other things. I read to her---the only book she wants lately is Dr. Seuss' ABCs, because she has a computer version of that and the book is just the same. I tried to play blocks with her. I tried to do a workbook page about shapes with her---I KNOW she knows at least circle, but she just completely wouldn't do a thing. I tried just following her lead---floor time, as they like to call it. She just cried and begged for "Kipper, Kipper!" I tried to do dishes with her "helping". She asked for a glass of water and flung it on the ground. I opened peanuts in the shell for her, the only way she likes peanuts now. I did something wrong, and she grabbed all the peanuts and flung them on my bed. I could go on and on. Just mostly picture the background sound---either a crying that never ends or a giggling kind of meaningless laughter that never ends.

And I can't help it---I extrapolate. I picture this day multiplied by a million. I picture her at 20 or 30, when I am older and more tired than I already am, everything the same. That's not fair to her. I hope she will learn, she will grow. I should look forward to the future. But I don't, lately. I am just so tired. I read an article somewhere today that said it's been shown that mothers of autistic kids have the same stress level, as measured by blood hormones, as combat soldiers. I've never been in combat, and that seems a little extreme, but not totally so. You are always on guard. You never know when something is going to go badly wrong. Even when all seems calm, in a second there can be screaming, broken things, a child running off. Even when your child is away, at school, you are waiting for a phone call. It never, ever, ever, ever ends.

Still with me? I did warn you! I'll try to get my energy and hope back soon. But not today.

The dream

I'm a hard core dreamer---I have dreams every night that I remember. But I don't write about them much, having learned that most people aren't really interested in hearing other people's dreams! Also, for whatever reason, I rarely dream about my kids. It always confuses me as to why, but in my dreams it's usually high school or college or some undefined place or time. Last night, however, I had a dream about Janey, and it has me thinking.

In the dream, I was taking Janey to visit a college. Janey was her same age as now, six. The college was an engineering one. Janey was as she really is, autistic. I had an interview with the president of the college, a woman that while being very polite, let me know that it was quite unusual to take a six year old with autism to seriously visit an exclusive college. I had the boys with me, and she pointedly asked why I wasn't taking THEM to the college, which would make a lot more sense. I had an answer ready for her. I said it was vitally important to have a concrete goal for Janey, so I could make everything I did with her work toward that goal, and my goal was for her to go to college to be an engineer.

I wonder what, if any, meaning the dream had. I don't think Janey will ever go to college. I am not working on that as a goal. But do I need a goal for Janey, a vision of what I want for her, for her future? I don't think that way, usually. I don't have goals for the boys, besides kind of vague ones that they be self-supporting and give me some grandchildren maybe, but I trust them to make their own goals. Janey isn't likely to do that.

So what are my goals, if I were to make some? Well, I'd like her to learn to read. That's a big one for me. I'd like her to learn enough self-help skills that she take basic care of herself, whether she someday lives in a group home or on her own or, most likely, with us. I'd like her to learn to talk well enough to clearly tell us how her life is going, so I won't worry constantly about what happens when she isn't with us. I'd like her to have an interest that makes her happy, whatever that might be---swimming, music, books, art, knitting, collecting some knick-knacks, whatever. And how can I work on those goals? I guess---keep trying to teach pre-reading skills. Keep working on things like dressing and meals (those are her stronger points, which is nice). Work on giving her the words to tell us about her life. Encourage the things she shows an interest in.

But is that what the dream meant? I don't know if dreams are just random, but this one felt like it meant SOMETHING. Maybe a reminder that she is only six, and I don't need to worry about her in the future at a college age right now? Maybe that I should be focusing more on goals for the boys? Maybe (I'm daytime dreaming here) that she has some hidden abilities and some day WILL go to college)? Who knows?

I promise---no more dream blog entries for a year or so!

Weekly Work-ons

The last few weeks, I've been posting on the fridge a list of things for us to work on with Janey. We have a color, number, letter and emotion of the week, a command of the week (for example, this week is "be patient"), a body part of the week and a verb of the week. I'm hoping it gives everyone ideas for something to work on Janey with when they have a minute. I've noticed some good results---I've been saying "be patient!" a lot and Janey is starting to mimic it back appropriately, and she seems to like the body part---this week is "leg". I might add a few items---like an animal of the week, a opposite of the week, etc.

Something I think would be extremely helpful, and something I've searched for without success, is a list of skills and ideas to work on with Janey---something like an autism curriculum. Regular preschool curriculums don't work. They assume kids learn just by absorbing things around them---they do project based learning, books with the concepts to learn mentioned, self directed exploring of toys, etc. Janey needs to be specifically taught things. She isn't going to learn just by picking up things here and there. So I would love lists---here's the words she should understand, here's the animals a 6 year old should know, here's some verbs all kids need to learn. I try to make up my own lists, but it's not easy to do. It's something I might try to do someday, and make a web page about, just by winging it, but I am sure there are people that really know how to do that kind of thing. This is all of course to compliment what she learns at school---I'm not her primary teacher, I'm her mother. I don't want to be her primary teacher---if I did, I would homeschool her. But she needs more practice and reinforcement than typical kids, and I want to do a good job with that.

I think this is an area where all the focus on "autism recovery" and similar concepts takes away from educating the kids right here in front of us with autism. I could find a million pages on the web about how to "cure" Janey, but very few about how to work with the "uncured" Janey. What specifically does she need to learn? How can I best teach her? That is what I want to know.

Freddy's observations

Here's a few emails Freddy sent me, after working with Janey on colors using M&Ms. They show both how Janey is doing and how great a teacher/therapist/brother Freddy is! I've noticed what he found about the red family of colors to be true, and also how Janey doesn't seem to understand how words like "not" modify a sentence.

First of all, Janey asked for M&M's. I gave them to her, but with a task,

In a case with two different colored M&M's, to my surprise, Janey picked the correct M&M about 95% of the time when I asked something along the lines of, "Which one is GREEN?" She seemed to get orange and red mixed up, though.

In a case with three different colored M&M's, Janey picked the correct M&M around 75-80% of the time. Again, colors in the RED family, (red, orange, pink, etc.) caused trouble,

To try something new, I asked her, "Which M&M is NOT blue?"

In a case with two different colored M&M's, she picked the correct M&M below 50% of the time, In other words, she was guessing.

However, in a situation with more than two M&M's, around 80% or so of the time she picked the M%M that I specifically told her not to pick. So she basically ignored the word "not."

After about half an hour, she grew bored and decided to run around speaking to herself, and occasionally asked for crackers from me,
She's definitely making progress with her colors, nonetheless,

In my last email, I forget to mention some findings,

In a case scenario where there was one M&M on the table, and I asked her "What color is this?" the majority of the time she answered correctly. Her strong colors (the ones she answered correctly on her first or second attempted color) were blue, yellow, green, and brown. Everything in the red family (red, orange, etc.) were all referred to as pink unless I told her the correct answer.

The Sibling Toll

It isn't only the child with autism or the parents that are affected, it's also the siblings---the impact on them in huge, and often not recognized. I've read a lot of books in the "I saved my autistic child" genre, and I've noticed so often how siblings, if there are any, become a side note---sometimes a word of regret that "they had to raise themselves" or a note along the lines of "they were a huge help". That bothers me.

I got thinking about this issue this morning. Freddy is in an improv troupe, and they have two shows today, one at 3 and one at 7. William will babysit so Tony and I can go to the 7 show (last time we did that, I realized it was the first time in literally probably a decade we had gone out together at night alone other than for a quick dinner) but no-one can go to the 3 show. I wish I could---each show is different as it's improv. But it's not possible. One of us has to work, in order to keep up the level of basic food and clothing and heat needs we've become so attached to, and one of us has to take care of Janey. There is no way I could take Janey with me to the show, as one might be able to take some six year olds. I told Freddy I was sorry, but I realized even saying that that for a teenager, not having parents around for every show was probably not the end of the world, and he indicated that. To some extent, I think it's good for kids to have some independence and self-sufficiency fairly early, but I wish it was a choice I could make, not something forced onto him.

And that's just a tiny bit of the ways the boys lives are affected. We don't eat out as a family, we don't go to movies or public events or trips as a family. We can't. Everything we do, every action, is affected by what Janey can tolerate. We have a Netflix movies that we've been wanting to see for a month now, but Janey hasn't been sleeping early enough on weekend, so it goes unseen. And there's just the little moments---the boys are trying to tell me something about their day while Janey melts down, and they never finish the story.

And that's the short term part. The long term part is more. That's another place where so many books and articles leave me cold. It seems to be the thing to do to tell siblings that the autistic child is not their responsibility---that they are not going to have to be part of her life forever. That's just not true. Someday, although I don't like to think about it, Tony and I will be gone. Hopefully, my children will still be alive. And it's very likely Janey will still need someone to at the very least, help manage her life. At the most, she might need a place to live. And they are her family. Someday, she will be their responsibility. It's far in the future, but it's the truth, and I'm not going to lie to them about that.

So where's the good part for the boys? Well, as I've slowly figured out in life, it doesn't always work that way. You don't always get rewards for something tough you have to do. But I think in this case, there are a few good parts. Janey loves her brothers, and they love her. She responds to them in a way she does to almost no-one else. Because by necessity, we are focused on home, because that's where Janey does best, we as parents are not out living our own lives much, and so we are here to care for them. I don't work outside the home, which I hope has been good for them. I think they are learning to care for others, and to see a family as a unit. They have a lot of freedom for kids their age, not freedom to just come and go as they please, but freedom to do age-appropriate things without parents interfering unduly, and I believe that's a good thing for teens. Mostly, I hope they know they are a vital part of the team. I think they are learning young that they are needed and appreciated---that we couldn't do it without them. I hope they know that. I love those guys so much.

Tiger Mother?

I just finished reading Battle Hymn of the Tiger Mother, about a mother that pushes her two daughter beyond the point of anything close to normal, in my eyes. However, it did get me thinking. I am probably the opposite in a lot of ways of a tiger mother---I don't push my kids very much at all. I want them to be happy, and discover their own interests, and have time to just think and relax---all of which are not at all tiger woman priorities. But do I do them a disservice, most especially Janey? Does she need to be pushed more---am I missing crucial times in her life to give her the knowledge and skills she needs to have? I don't think so, but I'm far from always right about those things. This morning I pushed her a little---trying to get her to pick the correct letter out of 4 I wrote on a piece of paper. She probably didn't do much better than chance, but I kept trying. She can be lazy---she often just sort of waved her hand over the whole paper, or picked a letter without looking at the paper at all. Is this part of the autism, or just her personality? I've never been very driven---I do well at things that come easy to me, but not at things I have to work at. I was never pushed much, but I don't think I would have liked to be. Perhaps I could have been a doctor or lawyer or something, but I don't think I'd have liked that lifestyle. But are those sour grapes? Hard questions.

And in contrast, I'm thinking about an area where almost anyone would have felt it was appropriate to push Janey, but which may have backfired and caused real problems. She had her physical yesterday, and I talked to her doctor about how she holds in urine for long, long periods. He was quite a bit more concerned than I thought he would be, and said that can be a true problem---that urine retention can cause urine to back up into the kidneys and cause kidney damage, and that he wants me to stop all efforts toward toilet training until the urine holding is resolved. He said kids like Janey sometimes can learn the first part of toilet training, holding in urine, but stall at the second part---letting it go on command, and the result is a serious problem. What bothered me is that I didn't follow my instincts with this one. I didn't think she was ready to be trained, but hey, she's 6, every book you read says you need to get strong with the training, that any child can be trained....so on. And I am sure she WILL be trained, but she wasn't ready now. I think about the times she peed on the floor and I made her help me clean it up and talked to her about how we pee in the potty. Pretty mild stuff, but she can sometimes be listening more than I know, and so she's been trying to do the part she CAN do---holding in the pee. If she isn't better in a month, we have to take her in for more testing to see if she had kidney damage.

I don't know what the message to me is here. Trust my instincts always? If I'd do that, the boys would never have been able to walk outside without holding my hand---they still would be.

It's all tough. Being a parent at all is tough. You made decisions every day that might seem minor, but might actually be hugely major. I'm a bit overwhelmed, but I'll muddle through.

I wish it didn't work

Janey has had some great days lately. She's been talking a lot, being adorable, happy, sweet. When she is cheerful, it all seems so much easier. I can feel hopeful---I can feel like the good kind of special needs parent, not the grouchy bad type.

So what does my title mean? Well, the difference in Janey's behavior is connected with us raising the dose of her medication a little. A week ago, we saw her psychiatrist and told him things had been getting increasing tough---more crying, less talking, more tantrums, more not sleeping, etc. He's very conservative about the medication, but he said she might have outgrown her dose and we could raise it a bit to try. We held out a few days, as the medication scares us, but finally gave in. Janey can't learn when she is crying all day, she can't learn when she hasn't slept, she can't enjoy life when whatever inner demons she has are tormenting her. So we gave in. And within a day, we saw the huge improvement.

I shouldn't really wish it didn't work. I'm GLAD it works. The medication doesn't MAKE her talk, or learn, or be happy. It somehow or other calms and quiets down whatever is inside her head that makes it so tough to be happy. It gets rid of "the banging noise" and "the clicking noise" that she once in a while talks about when she is screaming---the noises or voices or whatever they are that torment and scare and dominate her. And I am hugely grateful for that. But no-one on earth wants to give their 6 year old girl a medication that is basically called an anti-psychotic.

But it's great to see what I thing is the "real" Janey---the personality that she has when she isn't tormented. One the way to school yesterday, she did some great talking. An ambulance went by, and I remarked on it. About 5 minutes later, she said "I hear the ambulance!" That's a very rare kind of statement for her---something just commenting on what she's heard, not asking for anything. A bit after that, she said "The CVS!" We were passing the CVS store she loves, and again, just a comment! But then she made the connection and said "I want chips!" as on occasion I've been known to get her some Pringles there. I told her "First school, then CVS" which seems to be the way she best understands waiting for things---she doesn't seem to get terms like "after". Of course, I am a bad Mama and don't always "remember" to stop at the CVS on the way home unless she remembers, but hey---it's less junk food that way. Last weekend, another great talking moment. We were at a roast beef place, sitting by the window (and it's great in itself that she was able to go to a restaurant, even one that is semi-fast food such as this one) and she saw a bus pull up and let people on and off. She yelled out "I want to hop on the bus!" We haven't heard that before, especially the "hop" part! William was with us and of course was thrilled she was showing an interest in public transportation, his favorite thing!

And so it goes on---patching together the best life I can for Janey, doubting myself every inch of the way, but trying to always use as my guiding principle---what makes her able to most live in our world without frustration and sadness?

Something I am not sure about

Lately, Janey has done a few things that make me half wonder---can she read? It would seem unbelievable to us---she doesn't seem to know letters, she hasn't shown any signs of reading readiness---but a few odd things have happened that make me wonder. Just now was the oddest---she was watching YouTube videos, and they show suggestions for other ones on the side. One of them was "Maisy Rain". The picture had no sign of rain in it, and we don't think she's ever seen that particular Maisy, but she said "I want Maisy Rain" and clicked on the picture. It was a little freaky. Lately she's also been asking for videos on the Netflix instant cue by name, including one that I don't think we've ever told her the name of "Kipper Puppy Love". Freddy has told me several times he was sure she read things, also. But I am skeptical. I don't think she can read. But I do wonder. She knows all her VHS tapes apart, and a few of them are identical except for the names of the video. I figured there must be some other cue besides the words, but maybe not.

The fact she can easily click on YouTube videos is also odd. I don't think she shows this skill at school at all. But when she's in the mood, she can use YouTube like a pro. She often does it when we aren't looking---we will turn around and some video is playing we never even knew existed. A few times, it's been when YouTube or the internet wasn't even open to start with.

But it all is part of the whole problem. It's like having a computer with a damaged hard drive. There is tons of information and programs stored there, but accessing them is the problem. We know Janey knows the names of hundreds and hundreds of objects. When she is completely in the mood, and we are rewarding her, she will name almost anything you put in front of her. I've talked lots of times about how many songs she knows by heart. But you can't access any of this information easily. You can't say to her "Sing 'God Bless America'", which she knows cold. She would never do it. But when she's seized with a patriotic mood, she'll sing the heck out of it.

I don't know how to help her access what she knows. Maybe she doesn't want to. I wish it was easier for her. I feel like I should just be glad she does know what I know she knows, and not have to have it be provable, but I am not. I want her to be able to show others. Maybe that's what I need to let go of.

Think about what you CAN do...

This morning, Janey was watching a show she likes, Ni Hao, Kai-Lan. There is a little social message to every episode, and this one included a song to illustrate the point "Don't think about what you CAN'T do, think about what you CAN do!" It made me think about what Janey can do, and reminded me to be grateful for those things.

She can walk---there was a time when she wasn't walking at nearly two years that we weren't sure that would happen. She can see and hear---very well, from what we can tell. She can eat and breathe on her own---I know kids that need help with those things. She can talk a little---not every child with autism functioning at her level or higher even can talk at all. She can hug us and smile and be happy. She can express her needs and wants on a basic level. She can sing and enjoy music. She is healthy. She can dance and jump and splash in puddles. She can look at books. She can pat our cats. There's a lot she can do.

Now, don't worry, I'm not turning into a happy, cheerful, everything is a blessing blogger. That's not me. But from being part of those on the slow boat to Holland (if you travel with me, you know what that means), I've gotten to meet a lot of families with kids that have a lot of different abilities and disabilities, and I know very well that I have a lot to be thankful for. As my friend Maryellen said when I talked to her about this today, that doesn't mean it's easy, or make it easier, but it makes me keep in mind the things I need to never take for granted.

World Autism Awareness Day

Well, here it is, World Autism Awareness Day again, and I don't have a single WAAD card out.

I did a quick look today to see what kind of events are planned for today. As I kind of half expected, I didn't really see any that were FOR autistic kids or adults. Lots of fundraisers, walks, lectures, etc. But not something I could take Janey to. I am grateful for the awareness, for the research, for all of that. But if it's autism AWARENESS day, perhaps it would be a good day to expose people to actual human beings with autism---to let them see what autism actually is and isn't. I had ideas like having restaurants have a special time, from 2-4pm or something, where they would just for that day be autism-friendly, and you could go there and not feel worried if your kid screamed the whole time, or spilled water, or ran around. You could just sit and eat a meal among other families with autistic kids, and smile at each other, and enjoy being out. Or another idea---places like indoor gyms or pools could have an autism time every April 2nd, so you could get some family recreation. Or maybe somehow there could be highly staffed parties for JUST the kids, so you could drop them off for an hour or two knowing they were doing something special and fun, while you got a break. You know, sort of like how parents of "typical" kids can sometimes take their kids to birthday parties and LEAVE them there and get coffee---that kind of luxury treat for everyone!

But those are dreams. I have to be content that Janey is living in a world that certainly IS more aware of autism than a world 20 or 40 or 100 years ago would be. I am very lucky that way. People know what autism is, kind of, even if they haven't met a lot of people with it.

I'm thinking of ways myself I can actually live up for the name of the day. How I can I make people more aware of autism? One thing I try to do is tell people Janey is autistic. I like to do that for many reasons. It explains her behavior, it lets people know she isn't just being rude in not answering them and it lets them meet someone with autism. It has worked well for me overall. There are quite a few stores where Janey is known, and I feel good about that. This blog is another way---I try my very hardest to write honestly here---to bare my heart about Janey, not just the bad but the good. I wonder if I show the good enough---that's a part of autism I want people to be aware of to---that Janey is a delight often, that she is fascinating in a lot of ways, that I love her intensely and I always will. I want to give some hope to other parents with newly diagnosed kids. But I don't want to lie. I don't want to say it's better than it is, I don't want to be all sunshine and flowers. I want to be honest. I can also encourage my sons to talk about Janey. I sometimes suggest her as a topic for essays at school, or tell them to not hesitate to explain to friends why sometimes they prefer to spend time at other people's houses instead of having kids here. I want them to be proud of her as a sister, but to also let them know it's hard, it's something THEY should be proud of themselves for---being good brothers to her.

And so awareness is a good thing. But I wish this day could somehow also INCLUDE those with autism, instead of just being ABOUT them.