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Thursday, November 24, 2011

Happy Thanksgiving

I want to say Happy Thanksgiving to anyone reading this, and an extra-extreme Happy Thanksgiving to the other autism/special needs parents out there. My brothers and sisters in lifestyle---you probably understand how bittersweet holidays can be, even one like Thanksgiving, where it is not all about kids being expected to act in certain ways. I am so thankful for Janey, for having her, for her beauty and grace and how unique she is. I am not thankful for how hard her life is now, and how hard it will be in the future. I am not thankful she is going to have to struggle her whole life to be understood, to do things that the rest of us take for granted. I am VERY thankful for the people out there who love her---the family and friends and teachers and staff who care for her. And the students---the amazing students in her room at school who accept her. I am not thankful for how hard life with Janey can be sometimes. It doesn't take a holiday---we had many meltdowns today, diaper incidents, just as many tough times as any day. I am not thankful for the ways autism (not Janey, but Janey's autism) makes life so difficult so much of the time. So bittersweet. I should be more just plain sweet today, but more and more, I am striving to be just plain honest, not just plain sweet. I can say, though, I am thankful for Janey. Not for all her diagnoses, not for all her behaviors, not for the diaper incidents or the crying, but for Janey herself. For the wonderful little girl she is, despite all she has to deal with internally and externally. And I am thankful for you all, my fellow travelers on the slow boat to Holland, to quote another parent. Despite the differences we might have in views and opinions and approaches, we are all in this together. Thank you.

Tuesday, November 22, 2011


I thought I'd update some on the iPad, as there is so much hype out there. I feel like it's the first big autism "cure" type trend I'm in the middle of. Of course, no-one is saying it's a cure, but it sometimes feels that way. I think that's why I resisted getting one.

So far, it's fair to middling with Janey. She loves the Starfall app. I'm sure that's because she's used it a lot at school, and so there are no surprises there. What impresses me is how well she can navigate it. I didn't realize she would be that skilled at moving from screen to screen, and getting back to where she wants to be. Mostly, she wants to see the same screen numerous times, and to do that, you have to go to the next screen and then back, or restart the program. So she's learned to do that with ease. It makes me a little hopeful about her future use of technology. She does "get" it in some ways.

However, I put lots of other apps on there (it's amazing how many great things you can get for a dollar or two) and she has little interest in them so far. I'm trying hard not to push them. I try to remind myself that she doesn't interact with things the same way I do. I'd be driven to try each one, to see what each one did, but she doesn't have that urge. And if I try to direct her, it either makes her less interested or doesn't affect her at all. I guess in some ways, that's like all kids. So I am trying to casually play with apps I think she might like, without talking or comment, to spark her interest.

It's an amazing piece of technology, but it's not the miracle devise for autism people want to think, at least for Janey. It does seem to work well with the way she likes to interact with things, and it is teaching her computer use skills. I can see her using more apps on it in the future, hopefully. I'm not sorry we got it, but in some ways, it can be depressing to try something that gets so much hype. It's the history of autism treatment, I think. It's because Janey and kids like her do have those strange, compelling moments of clarity, the splinter skills, the times when they are fleetingly so "normal". Even though I know very well otherwise, sometimes I can't help but be taken in by the wish that we will find the right key and unlock the "normal" Janey. And of course there isn't one. What there is is my own Janey, my beautiful mysterious girl.

Sunday, November 20, 2011

Cheerier, and no miracles

Janey got out of her last crying spell fairly quickly. I'd say it lasted a week, and by last Friday, she was very, very cheerful---not manic, but cheery, smiling, talking---great. This weekend was terrific too.

Tony and I thought and thought and discussed and discussed and finally decided to get Janey an iPad, with the only respite money we've ever gotten from the state. We got a one time $500 last summer, and I had saved it thinking I might use it for the iPad, and then had pretty much decided not to, and then with all the 60 Minutes buzz, we decided to get it. It came down to it being worth a shot---that we figured it couldn't hurt, and we didn't want that money frittered away on small things for her. So we bit the bullet and bought one. I spent a long time looking up apps that would be good. I was a little surprised that the main communication app that was shown on 60 minutes costs in the hundreds of dollars. I can't afford that. But there are quite a few free apps, or ones that cost 1 or 2 dollars. I got both autism apps and toddler apps, as Janey functions at about a toddler level in terms of computers.

There's not going to be any miracles for her with the iPad, I know. She likes it okay, and from using it at school, can find her apps on it, open them and sort of run them. But interactivity is not her thing. She likes to watch passively. I didn't put any books that get read to you or videos on, on purpose, but the main thing she's done so far is go to Starfall, which she uses at school, pick the K and have it play a kangaroo hopping over and over and over and over again. I guess there's skill there---she must know what the K is, but it has no real usefulness---I don't think she could find a K in another context. She also likes a game called Fish School, where just by touching fish they rearrange themselves into the letters. What she REALLY loves is hitting the button that makes you back to the menu, and then rapidly hitting the app button she likes, so going back and forth between the menu and the app over and over. I got the program I saw on 60 minutes, to have her touch pictures of objects to see her receptive vocabulary, and when she was motivated feeling, she did very well. She knows lots of words, like "robot", "remote control", "harp" that she would never say, at least when she has 3 pictures to pick from.

And what is missing here is the desire to really communicate. The kids on the show that used the iPad well WANTED to communicate. Janey gets by, with her few words and her actions, and I don't think she has a strong desire to interact more than she does. I might be wrong. But I think that her mind just isn't terribly set up to want interaction with others most of the time. She likes people that she likes, she is not adverse to others being around, but she isn't dying to tell us all kinds of feelings or desires. I have no idea how to change that. I have no idea how to motivate her, none at all. Her motivation is at the level of finding that "K" to see the kangaroo, but she doesn't have the curiousity that would lead her to see what would happen with the M or the R. If I showed them to her, she might like them, and try them again, but there's no push to find out more. She doesn't want to please us, not that she wants to DISplease us, she just wants to live her life the way that feels like contentment to her. It's frustrating. But how can I change it?

Anyway, it's great she's been happy. It's great to see her smile. And who I am to judge what makes her happy, just because it's not exactly moving her forward?

Thursday, November 17, 2011

The crying is back!

The last week has seen the return of the crying. It's the hardest part of Janey's autism for me, and whenever it goes away, as it did for most of the early fall, I hope it will never return, but it does. Imagine a crying that starts literally when Janey wakes up, and continues off and on (during some periods, almost all on) all day long. It's very, very tough. During these times, Janey seems to talk less, and when you do get her to talk, she really has no idea what she wants or why she is sad. Believe me, we have tried. When we do the trick of starting the sentence for her "I want....", she will fill in one of about four responses---baba, Kipper, Angelina or snuggle on Mama's bed. None of those are usually what she really wants. Any of them might make her stop crying for a few minutes, but no long term. If we try "I am crying because...." and then offer choices "I am sad", "I am angry", "I feel sick", "I am bored", she will usually pick I am sad or I am angry, but I really don't think she gets the meaning of those words. Change of scenery is hit or miss. She likes the car for a little bit, but not for long. She cheers up at the idea of going to school, but cries at school a lot too, from all reports. It seems like it's just a storm that has to pass. Usually, within a week, she is better. She will be "regular" for a while, and then, after a while, the mania period hits, where she doesn't sleep, she giggles insanely all day and she is just generally hyped up.

They don't diagnose manic-depression in children any more. They don't think it really occurs in children. So okay. We won't call it that. But it's cyclical, it's severe, there seems to be nothing to be done about it. It's heartbreaking. I feel guilty every day taking her to school, knowing she will cry there. But she'll cry just as much if not probably a lot more at home. She is occupied at school, and it gives me some time to gather myself together. I still feel guilty. I feel like when she is being tough, she is all mine to handle. When she's just autistic, or just delayed, I feel okay having more people enjoy her and teach her and appreciate her, but when she's crying or angry, I feel like it should be only me (or only me and Tony) working to keep her happy. And I have to let go of that, or go insane.

To be fair, this is far from the worst crying period she has. The crying is not all day. It is truly off and on. She wakes up crying, but she had a lot of time yesterday when she wasn't crying at all, and that is what was reported from school, too. Maybe that should be a hopeful sign. Maybe, as she gets older, these crying spells will be milder. Or maybe not. Tony thinks sometimes she's sad because she is becoming aware she is different than other kids, that she can't talk like them or learn like them. I don't think she's at that level yet, but it's possible. It would be hard to say.

I hope this current crying cycle is nearing its end. Hope springs eternal, so when it's over, I'll hope it never comes back, but reality tells me it will, and dealing with cycles like this is something we need to learn to do. If there is a sunny side to all of this, Tony and I were saying how it makes us realize that regular autism is nothing, regular retardation is nothing. If she were happy, we could pretty much care less if she is showing a lot of autistic behaviors, or talking very little. That's selfish to say---of course I want those things for her, but if they aren't meant to be, they aren't meant to be, and we can handle that. But when it's those plus unhappiness, it feels sometimes like we have been chosen for some special kind of torture, as has Janey. I try to end on an upbeat note when I post, but I'll be true to myself and not falsely be upbeat here.

Tuesday, November 15, 2011

Janey and the dogs

My sister had a copy of the picture I'd been looking for, showing Janey with 4 big dogs. We were at my cousin's house in Washington, during our big trip, and the whole trip, Janey was deeply in love with dogs. My aunt had a wonderful old Rhodesian Ridgeback, Gidget, and Janey loved her so much. It's part of why it's so perplexing to me that she has such a horrible phobia of dogs now.

Thinking about the dogs on that trip always makes me think about how the trip affected Janey. We drove cross country to Olympia, Washington. 6 days out and 6 days back, 9 days there. It was a wonderful trip, a dream come true for me. The boys and Tony loved it too. And mostly, at the time, Janey seemed to enjoy it. She turned 3 during the trip. Now, looking back, we date her autism starting to the trip. Before we left, I have to say she was showing a few small signs, and I was first starting to have questions. She started preschool a week or so after we got back, and within a few weeks, her talking pretty much ended. I always wonder if there could have been a connection. She spent long hours in her carseat, but she was next to Freddy, and we are talkers---there was certainly almost no time that she wasn't surrounded by conversation. But could she have gotten a blood clot from all the sitting? She wasn't sick on the trip, I don't remember any day during it she acted radically different, but in a way, the non-autistic Janey left us somewhere around the time of that trip.

I resist thinking about Janey before the autism. I try to convince myself often she really wasn't okay, even then. But then I think about how she was in Early Intervention all those 3 years, because of her severe physical delays, and no-one once suspected autism, and those were professionals trained to see it. I remember the last time the PT saw her, and Janey was totally discharged from EI. We laughed about how at least we knew she didn't have speech issues. It breaks my heart to think of that, sometimes. We have videos of Janey talking. I watched part of one, once. I suddenly screamed during it, a scream that I didn't even recognize as myself. I turned it off and told Tony I never wanted to see it again.

This is why although I don't think vaccines caused Janey's autism in any way (she had none anywhere near the time of her regression), I can understand very well how people that believe that did cause their children's autism feel. If she HAD had a vaccine at that time, it would be very hard not to associate it with the horrible regression.

I do think Janey always had the seeds of autism. She talked, she was social, but when I am really thinking about it, she was always a little bit something hard to define. She talked more to me than to anyone else, and there were friends of mine who had rarely heard her talk. I remember thinking when she was 2 or so that her words were like bubbles---beautiful and perfect, but when she wasn't talking, it was hard to picture that she could. But it was nothing like afterward, or like now.

So, like the Janey that loved dogs, that Janey isn't here any more. We have a Janey, and I thank everything there is to thank for that. I do miss my other Janey sometimes, though.

Monday, November 7, 2011

The Patience of Job

So you want to get in on the latest hot trend in parenting, being the parent of an autistic child? Congratulations! You're in for a world of excitement! However, there are a few traits you might want to make sure you possess before you give it a whirl. Today's trait---PATIENCE!

Let's use a little illustration, shall we? Perhaps from my own life? Okay Dokey! Today, Janey woke at 1 am! She had some fun requests---mainly "Barney!" The one Barney she likes to watch over and over and over and over---Barney's Top 20 Countdown, which is just 20 of his "best" songs. It doesn't even have the fun parts in the middle of trying to figure out why parents would leave their kids at some kind of day care where the only supervision seems to be a stuffed dinosaur that sometimes comes to life. It's just the pure songs, which are now carved in my mind for life. As much as it's a good time, I felt I wasn't quite ready for it at that time of morning, and so said "No, Janey, it's still nighttime. See? It's dark out. We will watch Barney in the morning". Well, Janey felt otherwise. So she kept asking for 2 hours, while I was half asleep. I would have actually given in at many points, but I was so darn tired I kept falling back asleep, only to be woken up by her kicking me or jumping on me and saying "Barney!". At 3 I decided Tony had slept enough, and woke him up to take over. He put Barney on, which of course only worked for a few minutes. But instead of falling back asleep, as she sometimes does, she stayed awake to think of other demands---"I want a baba! I want cheese cutter! I want cabbage! I want Kipper! I want take a bath! I want TV off (which means on)! I want snuggle on Mama's bed! (which always sounds hopeful but really just means she wants to wake me back up to see if I will be more responsive to her requests)" And all of this is paired with her manic style laughter, which is back. It comes back every couple months, along with the sleeplessness.

Tony was a saint, being very calm at all times. When I finally gave up on sleeping, about 5, I tried to be too. I've been gritting my teeth and being patient all morning. We had a bath, we put on Barney, I made a baba. Just now Janey came over and wanted ice cream. I said no. She is currently screaming her lungs out, kicking my chair, and if she knew more curse words, I'm sure she would be cursing me.

It's 8am. We leave for school in 30 minutes. I am hanging on for that. She likes school a lot better than home lately. I should say this upsets me, but it really doesn't. It makes me happy. I'm glad she has a school like that. One of the big differences at school, though, is there is more than one adult to deal with her. Here, there is just me right now, and soon, when Tony has to go away on business, there will be just me for weeks. I will be drawing on every ounce of patience I have. Sometimes, I bet I half would appear lobotomized to people watching me deal with her. I have to push down the emotions, answer cheerily but firmly, keep going and doing my everyday life stuff as well as trying my darn best to figure out what she needs and how to keep her happy, or at least not sad, or not crazily manic.

So, prospective autism parents, work on patience! Just to be on the safe side, if you are thinking of becoming a parent at all, work on patience! It's needed for all kids, but if you hit the autism jackpot and get an autistic model child, you will need it in spades.