Accepting Autism Acceptance

Tomorrow is Autism Acceptance Day.  You might know it as Autism Awareness Day, but like a lot of others, I have chosen to change the name.  I think most of us are aware of autism by this point.  The next step is acceptance, and that is a step not only for the general public for but many of us personally.  Or at least it is for me.

I struggled for a long time with the idea of autism acceptance. My reasons were many, but there were lots of times I heard that term and said to myself "Never!  Accept autism?  That's not going to happen!"  I always told myself it had nothing to do with accepting JANEY, it has to do with accepting her autism.  However, I think I'm finally there.  I've figured out what autism acceptance means to me.

Autism acceptance doesn't mean liking the tough parts of autism, or NOT liking the great parts.

When Janey bites herself or others, or when she cries for hours on end for reasons we don't understand, acceptance doesn't mean not trying to help her to feel better and stop hurting herself or others.  It DOES mean accepting that those behaviors are part of how autism affects her.  It means not denying the parts of autism that are so tough, not writing them out of the story to make autism more palatable.

When Janey is delightful, amazing, hilarious, autism acceptance doesn't mean that I can't enjoy the positive effects of autism.  I don't have to say "Janey is wonderful DESPITE her autism".  I can say "Janey is wonderful partly BECAUSE of her autism"  That's a tough one for most people to take, somehow.  But when Janey recites dialogue amazingly well, when she learns songs instantly and sings them so well, when she snuggles us without the typical pre-teen reserve---I accept that those behaviors are part of her autism, and I love them.

Autism acceptance applies to ALL parts of the spectrum.

This year, when the press decides to showcase people with autism, I wish for every Temple Grandin, for every child that has written a book or learned to type and give us all insights into their world, they would also showcase a child on the lower end of the spectrum, like Janey.  I don't accept Janey conditionally, and I dream of a world that doesn't accept people with autism because they have or might someday do something amazing.  Janey and and the children of my friends around the world with a child with low-functioning autism deserve to be accepted and to have their lives made as meaningful and joyful as possible.

Autism acceptance also applies to acceptance of a family's choices

It is very hard to see how fragmented and politically correct and potentially trigger-filled the world of autism is.  Part of what I think we all need to accept is that we've all made different choices in how we deal with the autism.  Some people embrace ABA.  Others do Floortime.  Others have put their children on special diets.  Some use vitamin supplements.  Some use medication.  Some homeschool.  Some have children in residential placements.  There are an amazing number of ways to educate and medicate and provide therapy to children with autism.  We might feel strongly our way is the best, but we need to accept another family might not feel that way, and as long as we all have the goal of helping our child live a happier and healthier life, these issues should not divide us.

I will close with a video a lot of you have already seen, as I put it on my Facebook page.  It's Janey surprising me with a different message than the one I asked her to give---I asked her to say "Happy Autism Acceptance Day!" but her Boston and 1/8th Irish got the better of her!  She also says in the video "I have autism"  I love her sweet voice as she says that.  I used to avoid using the word "autism" around her, but I have decided that's not at all what I should do.  I accept Janey's autism as part of the amazing little girl she is.  I love you, Janey.

Here's the video!

Unfocused Attention

Janey has had quite a few good days in a row lately, knock on wood.  She's been happy more of the time in the past month than I would say almost any month of her life.  It's wonderful.  There are still days with tears, and days like today, where there weren't tears but just quietness---no talking, slow moving, in a world of her own.  But most of the days lately have been happy days.

Of course, I'm trying to figure out what is causing the good days, just like I do with the bad days, so I can try to recreate those conditions.  And I think I have a theory.  It goes back to a day I kept Janey home when it was snowing a lot.  I had worried it would be a disaster, but it was actually a very nice day.  On that day, and a lot since, I've been giving Janey what I think of in my mind as unfocused attention.  That means I'm there with her, but we are both kind of doing our own thing.  For example, I'm doing dishes and listening to music.  She's in the room, dancing around and changing the music now and then.  I talk to her off and on, and I'm right there if she has a request or need, but I'm not right in her face.  I'm not quizzing her, or trying to teach her anything, or trying to make her talk.  We are just together.

Janey constantly asks me to "snuggle on Mama's bed"  I decided about 6 months ago to almost always say yes to this request.  It's one of the few non-food or TV requests she makes.  It doesn't really mean snuggle, but just to be on my bed with her.  She usually has something in her hand, a toy or a book or her iPad or something else to hold, and lately I am bringing a book to read or knitting with me.  I talk to her off and on, we giggle together, we play ghost with blankets, but we both are doing our own thing to some extent.  This kind of time together seems to work better than anything else to get Janey in a calm, happy state.

It's very, very hard to resist a couple temptations that would take away from this time together.  The first is the urge I always have to teach and quiz Janey.  Although it's never shown much of any sign of working in the slightest, I still often try to teach her shapes or colors or letters, or to show her pictures in books and ask her what they are, or to answer my questions.  I am quite convinced, logically, that Janey doesn't learn that way, at least not from me.  At school, I think she does more.  But at home, she doesn't.  She learns from observing, from copying, from seeing something often enough and suddenly getting the spark that makes her want to try it.  But she doesn't learn from drilling.  The other night, we were together in unfocused attention and she had the smile I love more than anything on her face.  She was blissfully happy.  I remembered how that day her ABA specialist had said how well she was identifying pictures of her brothers, and I couldn't resist---I asked her "Who is that boy in there doing homework?  Which brother is he?", pointing in to Freddy.  I was watching her face as I asked that, and I think I'll never forget her look, how it changed.  She went from the smile that would melt any heart to the shut down look.  Her eyes shut down, she stopped smiling, she looked visibly tense.  I saw exactly how it affects her to be quizzed.

The other temptation is to take any moment I can to be totally NOT focused on Janey.  I can only do this, of course, if Tony or one of the boys is watching her.  She can't ever be completely not focused on.  But for years, when Tony was home and able to, I tried to sneak in some time to completely NOT focus on Janey.  Often, this was fine---she was happy with Daddy.  But other times, she was desperate to be with me.  I would get frustrated---couldn't have I have 10 minutes just to myself?  Lately, though, I try to drop whatever I am doing if Janey needs my attention---not if she just wants me to give her some food or put on some show, but if she wants to spend time with me.

I think it took me a while to figure out how to interact with Janey in a way that makes us both happy because I felt I had to make use of every second.  I've read about Floortime, and it got in there someplace in my mind.  I had to challenge her, to complete circles of communication, to do things that got her a little off balance, so she learned!  I didn't stop to look at the results.  Neither of us enjoyed this time, usually.  It's a freeing feeling in a way to have Janey be eight.  I've done my time trying other people's ways.  Now I'm doing what makes Janey happy and calm.  I don't mean I'm allowing her to have anything she wants or do anything she wants.  But our time together is going to be, as much as I can make it, stress-free.  Most of the time, I have faith that if I do this, Janey WILL learn what she is meant to learn.  I look at things she can do now at home, and I didn't teach them to her.  She learned them on her own.  And I don't think she's ever learned a thing while crying hysterically.  She learns when she is calm, when she is happy.  And quite frankly, I am better at parenting when she is calm and happy.  So for now, while it's working, I'm going with unfocused attention.

My autism resolutions for 2013

I am not big on making New Years resolutions.  I don't ever like to delude myself, so I don't like to make ones I know I won't keep.  That's just a setup for feeling awful about yourself, I think.  But I've had some thoughts about what I want to do in 2013 in regards to Janey, and in regards to autism in general.  Four ideas, to be exact....

1.  Delight in Janey whenever possible.  There is so much hard about raising Janey, so much that is tiring and overwhelming.  But there is also a lot that is wonderful.  I am lucky that way.  I am going to try very hard to delight in her, when the opportunity presents itself.  I'm going to enjoy her singing, her amazing smile, her delight in little things, her eccentricities, the rare moments her talking comes through, the multiple moments that she uses the speech she has to get her point across.  I'm going to enjoy dressing her up, and giving her foods she loves, no matter how odd, and showing her off.  I'm going to sit more with her watching her favorite shows and laughing along with her to them.  I'm going to find more music she likes and listen to it with her.  I'm going to read her or tell her the kind of reading she enjoys---poems and fairy tales and rhyming books.  I'm going to let myself just plain have fun with her.

2.  Be easier on myself when the autism parenting gets tough.  Somewhere along the line I got the message in life that you must always carry on, keep going no matter what, don't allow yourself to wallow or admit being overwhelmed.  I don't think that's serving me any more.  If Janey doesn't sleep all night, and I have to sleep most of the next day, I'm not going to spend the day cursing myself and trying to stay awake and get things done.  I'm going to admit to myself that Janey is one tough kid.  She's a kid that overwhelms people like her doctor in just a 10 minute visit.  She's a kid that very few people, without the training in fire Tony and I have had, could handle at all full time, without breaks, without help.  She's a delight often, yes, but she's very, very autistic.  She's a toddler in a 8 year old body.  She require constant supervision.  If I need to rest and spend a day doing nothing more productive than playing Scrabble and reading, I am going to tell myself that the rest of the time, I work a job that respite workers get paid good money to work, and I deserve a day off once in a while.

3  Speak up about autism issues more.  I don't know how often I bite my tongue when confronted with someone advocating the latest "cure", when someone suggests I should find a babysitter so I can "get out more", when someone says that if I really tried, Janey could sit nicely at a table, use the toilet consistently, when people tell me how special diets, intensive ABA programs, Floortime all day long, getting a dog, going to Mongolia to ride horses, swimming with dolphins, etc, might be just what Janey needs.  I admit not everyone has told me those things personally, but they are all out there in the world of "autism cures".  Often, I just smile or say thank you.  I don't step in. I don't comment on Facebook conversations that I see that are pretty much attacking other autism parents for not trying this or that.  I keep the peace.  I feel a little guilty about this. I dare say I know more about autism than someone who once read an interesting Reader's Digest article about it, and I should not be afraid to speak up.  If it's hard for me to do, I can think about my friends with autistic kids, especially those just starting out on the good ol' Holland trip, and speak up for them.

4.  Treasure my fellow autism parent friends.  I thought a lot about the past year last night.  I thought how few people get my life, about how I have noticed that after spending time with our family when Janey is with us, often the invitations to spend time together don't happen again, how I always have my guard up when people are around Janey, how I always watch what I say, how she acts, how I'm always prepared to flee if she gets difficult.  How it's extremely isolating being her mother.  And then I thought about the people I know get it.  I thought especially about the first friend I made through this blog---that's you, Michelle!---and although we haven't met in person yet, how the few times I've talked to her by phone and the emails we've shared and the Facebook statuses we can read from someone who really, really does it have kept me going on many a tough day.  I hope to become real friends with anyone out there who reads this and can relate to it.  We have to be there for each other.  I realize more every day how important that is.

With that, I'll start 2013 with optimism and a smile, and with love to everyone sharing this journey.

Some reading

I read a couple books lately about autism.  I come and go on reading autism-related things.  Sometimes I'm not in the mood---I need the mental break that reading on completely unconnected subjects brings---but sometimes, it's good to read the perspectives of others that are dealing with the whole bit.

The first book I read about "If I Could Tell You" by Hannah Brown.  It was actually a novel, about 4 families with autistic kids.  It was set in NYC, in the moneyed high-level career world, which probably biased me against it.  I can never understand why the publishing world seems to publish SO many books set in that world, a world most of us just can't relate to one single bit.  I guess it might be because that's where the publishing houses are, and when the readers at them read book proposals, they think "Wow, that's so much like my life!"  Pretty narrow way to look at things, but I digress.  Aside from being annoyed that the people in the book barely blinked at spending sums of money that would keep my whole family supported for years on whatever autism therapy they chose, it wasn't a bad book.  The parents all picked different ways to deal with the autism, and reading the book would provide a good introduction to these ways, like ABA, Floortime, medical procedures (a bit quackish ones), more mainstream autism schools and so on.  The book seem to feel none of these therapies work well, at least in the eyes of the characters.  The only one that seemed to show promise was called the Sapir Method, and is mostly only available in Israel.  I didn't get a very clear view of what it consisted of from this book.  The book also featured career drama, affairs, family drama---all of which to me seemed a little pasted in to make it a book not JUST about autism.  But I'd say it might be worth a read.

The other book was "Seeing Ezra" by Kerry Cohen.  It was a more conventional autism memoir by a mother.  I liked it mostly.  The author gradually came to a conclusion I think I've come to also---nothing really changes autism.  It's part of the child, and the best idea is to accept it, love the child with it, and work gradually and gently to make their lives better and easier.  I admire Cohen for realizing this pretty early on, and taking Ezra fairly quickly out of situations and therapies that weren't working.  Ezra is higher functioning than Janey, but with some challenges she doesn't have, like eating only a very few foods.  It made me feel lucky Janey is an omnivore---something pretty unusual for kids with autism.  I felt flashes of annoyance at the money issues in this book too.  The family always has a nanny or au pair.  They ask parents for monetary help and gets all kinds of money for a new school.  I realized, though, when thinking about the two books, that the money didn't really make a difference.  In some ways, the fact we don't have any money to try anything much with Janey has prevented us from trying things that most likely would not have done much anyway.  But I wonder if people publishing these books realize how much it can irk us regular folk out there that they always have a nanny or babysitter or someone else being paid to watch their kids while they live lives outside autism now and then, and many of us certainly don't.

People often tell me I should write a book.  I've thought about it, outlined one, and maybe some day I will.  But I struggle with a few things to do with that.  There are many autism memoirs out there.  I would need to feel I could write one with something new to say.  I also think about the boys' privacy.  Any book would have to include them a lot, to tell an accurate story, and they deserve to not be written about, to have their lives out there for anyone to read.  They don't even like to be tagged in Facebook pictures.  But maybe, in the future, I'll figure all that out.  Until then, I'm glad I have this outlet for my writing.

Other blogs

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

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

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

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

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

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

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

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

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

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

Really?

I startled Janey last night. It was interesting---I don't think I've ever startled her before. She doesn't startle easily---she gets scared, but sudden unexpected things don't usually faze her. But she had fallen asleep maybe 15 minutes before I walked in the room and put on the computer. She jumped right up and started screaming and crying. She said "I scared you! I scared you!", reversing the pronouns as she usually does. I went over and held her and talked to her, and she started saying "I'm a scarecrow! A SCARECROW!" I realized she had watched an episode of Bob the Builder, and I think there's a scarecrow-like weird pumpkin head guy on that. Maybe she was having a nightmare, or she just thought scarecrow meant a scared person, or who knows what. I said "Scarecrows aren't to scare people. They are just to scare birds." Then she did the most unusual thing. She leaned in very close to me and said in a very low voice, in a tone I've only heard her ever use once or twice, what I would call a "normal" tone, a tone that sounded non-autistic, "Really?" It sent shivers down my spine. It's moments like that which can make people think somehow there is a "normal" kid inside every autistic kid---little moments of, I don't know what, clarity, or coincidental perfect timing, or something. I can't explain just how the tone was---it was just very, very different than usual, and had the body language along with it---the way she was asking was like "You can give it to me straight here. I want the truth" And then it was over, and I don't want to make that much of it. Mostly she's been pretty much as usual. Fairly happy most of the time. We've been home and I've been letting her do a lot of what she likes to do, and trying to do my own modified "floor time" about 4 or 5 times a day, just gathering a bag of toys she might like and interacted with her as much as she will allow, and trying to sneak in a lot of little bits of knowledge like counting or colors. Which I know you aren't supposed to do with floortime, but I said it was modified. I've been reading to her a lot too---pretty much just nursery rhymes, which I have a large collection of now. She likes to know what to expect to hear next---just the different pictures in the different books is enough surprise for her.

Depressed

I have been depressed lately. Usually I do pretty well not letting things get me down, but not lately. I am feeling like I am no good to Janey, that I don't do the right things to "cure" her, even though I don't believe in cures. But the people who do, who have faith in lactose free diets or ABA or Floortime or anything, at least feel like they are doing something. I see Janey making her hand circles, or obsessively pushing buttons on a play phone, or getting hysterical when I sing a song that might make her "stuck", or ignoring the 2 sweet girls from her class that run over to her and say "It's Janey! Janey's here!" when I know in a few years if she doesn't ever respond, they will just stop trying. I just don't get sometimes why this has all happened. I KNOW she wasn't autistic from birth. I KNOW something happened, starting around June 2007. But what? What did I do or not do, or what happened in her brain, WHY? Why can't I have a girl like it sometimes seems there are a million of, so talkative and cute and lively, or even shy and clinging and just wanting to be with Mama, but talking to Mama and her family, or even a brat who is smart as a whip (no, I don't really want that). Most days I am good at the unconditional love, but other days it's not that it's conditional, but it's just harder to feel an outpouring of it. I feel someone else could do such a better job than me.