Archive for 2010

Temple Grandin Movie

I watched the Temple Grandin movie the other day.  The one where Claire Danes plays Temple.  I always liked Claire Danes, ever since My So Called Life back in the early 90’s.  And I was really impressed with her ability to capture Temple.  I’ve never seen Temple Grandin in person (I hope to some day) but I have read a lot of her books and have seen You Tube videos of her giving talks about autism. 
The main thing about the movie for me is this: almost everything I come across regarding autism, all the books and articles and people I have met, almost all of them are about boys with autism.  I have hardly met any other mothers of daughters or adult women with autism.  Laura, the president of our local ASA is one of the very few exceptions, but her Aspergers is very high functioning and she did not have a speech delay, so I find it hard to look to her as a guide for what will happen to my Tallulah in the future.  Temple however did not speak until the age of 4.  She had/has eating issues, sensory issues, is super skinny and has lots of quirks, kind of like my Lu.  She is also brilliant.  She learns to speak, goes to school, has a teacher who tries very hard to understands her, figures out how to reach her, and brings out her brilliance.  In short this movie gives me hope.  I don’t mean to get too hung up on college, because not all kids go to college, it’s not right for everyone and it’s a real unknown if Lu will ever want to/be able to go, but I guess because college meant so much to me, was really the beginning of me having my own free and independent life, that it has sort of come to represent my hopes and fears for Lu.  I keep thinking if we can get her to the point where she can go to college, can handle the challenges and take advantage of the opportunities there, then she really has a chance at an amazing life.

So anyway, Temple Grandin.  If you have an autistic child, especially an autistic daughter, or are interested in autism and some of the mental gifts and challenges that can accompany it, this is a pretty decent film to see.  It doesn’t dwell much on the early difficulties, on the guilt and struggles of the mother, the early schooling that brought on speech, but from college onwards it’s really good.  And inspirational.  And I feel like the filmmakers do a really good job of trying to approximate what goes on in Temple’s head.  And the most amazing thing about that, is that Temple herself can tell them when they have got it right!  So much of the time I wonder what is going on in Tallulah’s head and I can’t wait until she can really tell me.  More than “Want Bullseye” or “Get off!” when she wants her shoes off.  I mean what’s really going on when she suddenly laughs out of no where.  Is she remembering something funny?  Or did she just see something funny that I missed?  Or when she gets upset out of no where.  And all of the inbetween times.  Every now and then I have a dream where she is a bit older and we’re talking to each other like friends, or like other mothers and daughters talk.  Nothing talk, about anything.  I can never even remember what we were saying.  Just that kind of talk that seems so inconsequential that it’s not really even worth remembering exactly what it was and I wake up in tears.  Most of my life I’ve been a pretty easy going person.  Not too picky.  Fairly easy to please.  I can usually roll with the punches and make the best of it.  It’s hard for me to want something this much.  It overwhelms me daily, the desire to hear her really speak.  To find out who she really is.  Not just inferring and guessing.  To have her tell me things I didn’t know.  To have her surprise me with her insights.  She’s come so far and is doing so well, but still I get impatient.  Watching Temple’s movie makes me impatient.  I want to look back on this period and talk to her about it.  I want to talk to her about what she was thinking and feeling at the time.  I want to know we made it through this and out the other side.  I want to know once and for all that it really will all be ok.  I love you Tallulah.  I’m trying hard to be patient.

Children’s Book Christmas Ideas!

So I’m trying out this Amazon Gadget because I kind of miss that ‘Now Playing’ or reading feature from myspace (one of the few things I miss about myspace), and I’ve also been doing some online Christmas shopping in the last couple of days.  So I’ll admit it up front, I know and really like both Jen Corace and Nikki McClure, but they have not asked me to advertise their books or anything.  I just think they are great and that lots of kids will like them.

To be honest, the Little Pea book in this box set is not Lu’s favorite book.  It’s all about food and she’s not really into food.  But the Little Hoot and Little Oink books are some of her most favorite books.  So cute.  A baby owl who doesn’t want to stay up late at night, but has to because that’s what owls do, and a very neat and tidy little pig who has to make a mess like the other pigs.  It’s a nice way to look at going to bed early and cleaning up your room.

I had a hard time deciding which Nikki McClure book to put in the gadget here.  They are all so wonderful!  Take a look at all of her books if you have a chance.  I’m sure one of them will work for someone on your Christmas list.  I’ve given the first 1000 days book to several friends when their children are born as well as some of the other kids books.

Ok, enough nudging from me to buy books that I like for your kids!  Hope everyone has great luck with the Christmas shopping and gift making.  Last year I vowed to try to make as many gifts as I could this year, but with one thing and another (mainly one child and another) I just haven’t had time, so I’ve been trying to buy gifts like books, music, and etsy.com handmade items as much as I can.  Love handmade stuff!

Holiday Photos!

Our good friend and great photographer Tamlyn Corr took some holiday photos of the girls for me the other day. Tamlyn has taken the best photos we have of both girls, especially Lu who has a very hard time looking right at the camera.

Or rather we have a very hard time getting her to look at it. I think it’s the flash she doesn’t like. Tamlyn is good about aiming the flash up away from Lu’s face, but it is still a very hard hour or two of work to get just a couple of shots with Lu looking anywhere near the camera. But anyway, here are a few of the best.
Myffy on the other hand has no problem looking right at the camera. She seems to really enjoy being photographed. And she is pretty photogenic if I do say so myself.

Ok, now that I look through these again I realize that there isn’t even one where Lu is actually looking right into the lens, but hey, she’s cute in all of these and we’ll take what we can get!

Happy Holidays everyone!

Late November already

Wow, it’s late November already. Time to start thinking about the Holidays. And the end of the year. There were times during the past year when it seemed like time stopped and would never move normally again, the worst times, the terrifying times, but looking back now on the year as a whole, it seems to have passed by in a rushing blur. It’s been just over 9 months now since we first learned about Lu’s autism. Enough time to gestate a baby. Enough time to start a new life. Enough time to get used to all of this. It’s almost funny how normal it all seems now, all of the appointments and therapies, all of the journaling and keeping track of different behaviors and symptoms, all of the wonderful new people in Tallulah’s life and ours. I realize that often the moments when I’m most moved to write about what’s happening are the moments when I’m upset and need to vent, but the truth is that things, overall, really are going pretty well. Better than I could have hoped for 9 months ago. I need to keep my eye firmly focused on that when the daily exhaustion and frustration or difficulty threaten to overwhelm me. When I think back to all of the first fears of 9 months ago I can see just how far we really have come.

Last February Lu was very nearly non-verbal. She did not make eye contact. She did not know her own name. She did not ever follow verbal directions, nor could she give verbal directions or make requests other than more, milk and zeebee (for her zebra toy). She communicated by thrusting our hands towards things she wanted. She wouldn’t even point. She tantrumed, she screamed, she spun, she roared, she ate all kinds of things that were not food but ate almost no actual foods. She barely slept. She lined up her toys but did not play. She took no notice of other children. She took almost no notice of adults other than Mom and Dad. She was in rapid decline, losing language and interest in words, gaining new bizarre behaviors day by day.
But now, not even a full year later, pretty much everything on that list has changed, at least somewhat. To meet Lu now most people would never know that she used to have a problem with eye contact. Her attention is now easily directed by getting down next to her, pointing and saying “What’s that?” or “Who’s that?”. When she hears a new name she almost always does a decent approximation, looks the person in the eye and can even be prompted to say ‘Hello’. She can now confidently make one word requests for her favorite things and can be prompted to say “I want Bullseye!” or “I want Jesse!” or whatever the favorite toy of the moment is. She has been taking more notice of Myffy lately, and not only to try to thump her anymore. She does still knock her over sometimes, or gets really mad when Myffy wears something Lu used to wear or plays with something Lu considers hers, but there is definite improvement. Every now and then they even do what could easily be called play (like in these cute pictures with Stew)!
She’s doing better in school all the time now and has several kids who seem interested in trying to be her friend. And I think she’s starting to take a little more notice of them. We’re still working on food and sleep and potty training, but even those have great days, as well as bad. (Here’s a picture of Lu with her teacher Mrs. Good about to get a hip-hip-hooray for being the weather girls and posting the ‘sunny’ sign on the board.)
So I guess what I’m really wanting to say is that looking back, over the year as a whole, things are going pretty amazingly right now. My fears of Lu going further and further into a deep, dark place where we won’t be able to reach her have receded, and I now feel confident that with a lot of hard work and a lot of help from wonderful people, Lu will be able to have a full, rich and exciting life. Which is what I’ve always wanted for my kids. And that makes 2010 one really hard and fantastic year.

Lu + Preschool = we all get sick every other week

So you know how I said yesterday that Lu passed out in my arms at Music Class? Well, that does sometimes happen due to her extreme sleep depravation from her sleep disorder, but I think this time it was her body giving up the fight against some virus or sickness floating around that made it’s presence known today.

Lu did really well in therapy this morning but refused to eat breakfast and hardly touched lunch. Then she curled up and fell asleep on her Toy Story fuzzy blanket while we were trying to Skype with her therapist. She roused herself to go to preschool, but as soon as we got there it was obvious that she wasn’t doing well. Normally she runs straight over to the spot where all her favorite toys are for free-play time while everyone arrives. Today she asked for ‘hug!’ aka ‘carry me’, halfway down the hall to her classroom and didn’t want me to put her down when we got inside. She has seemed a bit cold and clammy in the car, but in the classroom she was suddenly hot, clung onto me and made little moans. I didn’t even get her out of her jacket. I just told the teacher I’d be taking her home to rest. A real shame too since there was a field trip to Warner’s Nursery today which still had it’s hay maze up from Halloween and everything. I think Lu would have really enjoyed it normally. But not today. She threw up in the car as we pulled away. Poor Lu. There are times when it just doesn’t seem fair that she has to struggle so much with so many things.

And it seems like Myffers has caught whatever it is too. She hasn’t thrown up yet, but she got cold and clammy for a bit too and seemed really uncomfortable and it was difficult to get her down for the night. Poor little thing. Which means that the rest of us will probably catch it soon too and pass it back and forth again for a few days. It really does seem that since Lu started preschool we’ve all gotten sick a lot more often than we ever have before. But I think everyone always says that, don’t they? And who knows, maybe it’ll just be one of those 24 hour things and both girls will be miraculously recovered by morning with no further consequence. Let’s hope so.

Stew just leaned over my shoulder to look at the title of my post and to tell me that people don’t like to read about bad news all of the time. I suppose he’s right. I actually feel like I post good news fairly frequently, but then maybe my view is a bit skewed. Anyway, both girls are sleeping sweetly and soundly right at this very moment, so I think I will go try to catch up on sleep myself.

Hope all 10 of my followers out there are doing great. Thanks for reading guys! Even when it is not the best of news.

Love, Jen