Archive for November, 2010

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

Lu does face-plant at school

Lu’s one-on-one aide in preschool went out of town yesterday and we don’t have a sub for her at the moment, so I went to school with Lu today. Stew took Myffy on a Ranch business trip to Prescott so I wouldn’t need a baby sitter. So after a really good morning in therapy and a great lunch during which Lu ate a delicious honey crisp apple and a whole yogurt without coercion or complaint, we set off for school together and she seemed really pleased when I told her I’d be staying with her. However, only minutes after I hung her back pack in her cubby and stopped a moment to talk to the teacher, Lu came running across the circle-time carpet holding a box of toys, tripped on nothing more than the toe of her shoe, and did an almighty face-plant without putting her hands out to break her fall. It looks bad. All below and to the left of her left eye the skin is grazed (rug-burned) and really red. It starts to swell. We apply a wet paper towel and someone goes to the nurse for ice. Lu tolerates the towel, but not the ice pack. Eventually she stops crying and the rest of class is pretty good with one totally stellar moment when a very sweet little boy named Logan tries to hug Lu while they are in line waiting to wash their hands after recess and before snack. Normally Lu is not at all interested in contact not initiated by her, but Logan holds out his arms, she looks up, looks him right in the face and then reaches out and gives him a really big hug. Cutest thing I’ve ever seen. Other than her only cousin and her little sister, I’ve never seen her hug another kid. Especially without any adult prompting. It was awesome.

After school we go get Myffy from my Mom’s where Stew dropped her off so we can eat a quick dinner before Music Together Class at 5pm. Lu was pretty tired by 5pm. I think she expended a lot of energy crying after hurting her face. She wanted to bring Jesse, Bullseye and Rex from Toy Story all in with her to the class. Normally we don’t let her take any of her toys into class with her, but it had been a rough day, so I let her take Jesse. Melt down in the parking lot over not getting Bullseye. We go into the classroom and I see several unfamiliar faces who must be doing make-up classes from one of the other sections. I’m struggling with the diaper bag and Lu (still unhappy) and Myffy clinging onto my knee, trying to get all of our shoes off when Lu lunges forward, I’m trying to hold onto her but she goes down with her hands out in front of her and me holding onto her middle. I hear one of the moms I’ve never seen before loudly say “No wonder she’s all scratched up.” I look up into a face that clearly thinks I am a child abuser. I’d like to defend myself, but the class is starting and I’m still juggling everything trying to get shoes off and sit down in the circle. I let the comment go, but seethe inside. I’m well aware she has no idea what my life is like everyday. Part of me wants to tell her, but who has the time or the energy? And what good would it do anyway? I’d look crazy and defensive and would probably just further cement her already poor opinion of me.
Usually both Myffy and Lu love music class. Usually they both dance around, act goofy, sometimes even interact with the other kids (mostly Myffy), but today it just wasn’t happening. Both wanted to be no where but on my lap for most of it, and after a few songs Lu fell solidly asleep. Again I see the suspicious mom eyeing me warily. My daughter with the swollen and bruised eye has passed out on my lap. Even some of the other parents are looking at me strangely. The music is blaring. Kids are banging on drums and shaking maracas and Lu is sleeping through it all. They probably think she has head trauma or something. Am I being paranoid? Am I just imagining it? Part of me just wants to get up and leave, but Myffy is finally enjoying herself, and she gets so little social time that I hate to take her away. I’m also exhausted and just want to sit there cradling Lu in my arms for a few minutes more. As the ‘Goodbye, so long, farewell my friend’ song comes on I rouse myself to get all our shoes back on to make a quick get away. I suppose I could have stayed and tried to loudly explain to the new parents that Tallulah is autistic and had an accident at school, but honestly, do I really care what they think? Ok, yes I do. Obviously I do. None of this would bother me if I didn’t care, right? Of course I want people to think I’m a good parent, trying hard and doing my best. I guess the real question is do I have the energy to expend on this? No, I do not.
So we pack up and leave, feeling a bit beaten down, tail between my legs, defeated. The car next to me parked too close for me to get Myffy into her car seat. I hate it when people do that. Maybe they don’t have kids and don’t think about it. I’ll give them the benefit of the doubt. At least Lu is happy to finally have all of her Toy Story toys back. I start the car. Put on NPR. Start to relax.
The kids have been bathed and are very sweetly asleep now. It’s rare I can get them both down so easily and so close to the same time. I should probably go get some sleep myself now. I just felt a bit keyed up and needed to write it out. So there it is. Poor Lu. Her face must have hurt quite a bit all day. Hopefully it will be better in the morning. I think I’ll make that my mantra for now. Hopefully it will be better in the morning.

We need to put Lu in Dance Classes!

So we knew Lu liked to dance a bit, but when we were at the opening ceremonies for the Walk Now for Autism Speaks on Halloween Lu got to see several dance troupes perform and she just went nuts for it! Take a look at her go! Time to get her in some dance classes!

Walk Now for Autism Speaks and Halloween!

We went to Phoenix for the Halloween weekend to participate in Walk Now for Autism Speaks, and it was great! Thanks again to everyone who supported us with donations to our walk sites. Between Stew and I we raised over $2000.00 with your help for genetic research into the causes and possible cure for autism. Go Team Tallulah!

They girls had a great time. We stayed at Lu’s favorite hotel in Phoenix, Hilton’s The Pointe at Tapitio Cliffs which has an awesome water village for the girls to swim in. We ate at our favorite restaurant, Stingray’s for sushi and got to see Auntie Anya for dinner. Then on Saturday we went straight to the Tempe Lake Park, found some parking, met up with Kayla and went in to enjoy the festivities.

Lu was a bit overwhelmed by all that was going on, but particularly liked the dance troupes and the assistive dogs. We spent most of the two hours before the walk watching Lu dance along with the girls and petting dogs. Unfortunately we didn’t make it to too many of the vendor tents around, but such is life.
The walk itself was lovely, out onto one bridge over the water, down and around awhile on the other bank, and then back over another bridge and back to the park. Myffy rode in the stroller the whole time, but Lu actually did quite a bit of walking with us at first. After the first bridge she started to tire and then we took turns carrying her and encouraging her to walk a bit more. I think if she hadn’t done quite so much dancing and running around to get back to the dogs she might have actually made it the whole way!
After the walk we went to Kayla’s family’s house for an awesome BBQ, the most amazing Halloween cookies I’ve ever seen and some good conversation. Then we loaded the girls into the car and they were asleep almost before we pulled out of the driveway.

We went back to the hotel, all rested up a bit, went for another awesome swim, and then put the girls into the Halloween costumes I got thinking we’d be trick or treating in Flagstaff (warmer costumes) and took them out to dinner.

Luckily all the staff at Stingray’s were dressed up too and everyone appreciated the girls’ costumes, which was nice since we didn’t actually have anywhere to take them for real trick or treating. But no matter! They were happy and satisfied and next year we’ll try to figure out somewhere for them to go trick or treating!

(BTW, Myffy is an elephant and Lu is a bunny)