Thursday, December 9, 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.

Monday, December 6, 2010

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 handmade items as much as I can.  Love handmade stuff!

Friday, December 3, 2010

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!

Friday, November 19, 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.

Wednesday, November 10, 2010

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

Tuesday, November 9, 2010

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.

Thursday, November 4, 2010

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!

Wednesday, November 3, 2010

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)

Tuesday, October 5, 2010

Epigenetics and the Diane Rehm Show

I called in to the Diane Rehm show last week. I’ve called in to other NPR shows before, mainly the programs that discussed how the new health care reform will affect insurance for children (our insurance has an autism exclusion and covers none of Tallulah’s therapies or treatments), but I’ve never managed to get through before. So this time I got through and I felt pretty excited about it. The show was on epigenetics and the guest has written a book called ‘Fetal Origins’. It sounded fascinating and terrifying. Basically what it said is that every single thing a fetus experiences in the womb can potentially affect that child for the rest of his/her life. Things like the predisposition for obesity, diabetes, heart disease, and a bunch of other things were included. I decided to call in about my nagging concern over the anti-nausea drugs I took for hyper-emesis during pregnancy.

I had every intention of very eloquently asking the guest if any studies had been done on possible links between the traumatic hyper-emesis prenatal environment (including the anti-nausea drugs) and the expression of the genes that are associated with autism. I’ve read so much about people believing that autism genes are triggered by these different events (this is part of the continuing argument behind the vaccine wars) that I couldn’t help wondering if anyone had bothered to look at developmental disorders in these studies along with things like obesity and diabetes. I also have to admit that I’ve never really gotten over the way Lu seemed to be developing typically up to a point, then regressed and sort of stopped. What changed? Why was her development derailed so suddenly. Why did she lose speech and go backwards? It seemed like a switch was turned on. Or off.

Unfortunately I was having a sleep deprived, kind of emotional day, and when I started asking my question I felt the need to explain who I am and why I’m asking, and I got so caught up in explaining our story, the difficult pregnancies, the autism diagnosis, that I started to cry on air. Shame. I can’t help it. I’m a Bryn Mawr girl. I don’t ever want to cry or seem weak in public. Especially not when I want to be taken seriously by the people I’m talking to. But I just couldn’t make it through my question. Instead I got derailed by assurances by the host (Diane was off that day for a voice treatment, can’t remember the other host’s name) and the guest that I did not cause my daughter’s autism. Taking the drugs, not taking the drugs, none of this causes autism. I tried to tell them I realize that and that I’m aware of the genetic component, but isn’t that just the sort of thing they are talking about? Genes being turned on and off by events surrounding the fetus?

Anyway, I just wanted to blog about it to try to get the real question that I meant to ask out there. Because according to the most recent studies I could find hyper-emesis affects 1 in 100 pregnancies and autism affects 1 in 110 babies born. Couldn’t someone out there follow 1000 or even 10,000 women who were hospitalized through out their pregnancies for hyper-emesis and were put on anti-nausea medication during pregnancy, for 5 years or more to see how many of those children have problems, including developmental disorders? Anyone out there want to take this one on? I’d love to see the results.
Ok. I've had my say.

Tuesday, September 28, 2010

The best day ever

So I was having a pretty bad day yesterday. Started out with Lu throwing her almost full pediasure chocolate drink with her meds in it onto the floor with a smash, splashing the milkshaky stuff all over her and Myffy and me just when I was about to put them into the car. I didn't shout directly at her, but I made a bit of a stifled "Aaarrgh" sound. They both had to be bathed, hair had to be washed, clothes had to be rinsed out, new clothes had to be put on, hair brushed, shoes and socks back on, and on, and on.

Then just when I was fastening Myffy into her car seat, Lu made a break for it, squeezed out through the dog door, ran across the porch and out the gate I left open for the dog. I ran, grabbed her and lifted her back through the gate, but left my left heel within the gate swing for just a moment too long. Aaarrgh!!! Much louder this time. It closed and scraped the skin right off the back of my heel, soaking my sock with blood, wetting my shoe. I yelled so loud poor Lu looked really scared this time and started to cry. Then I got them both in the car, strapped into the car seats and went back to the house to get the rest of our stuff. I put Lu's lunch box and back pack on top of the therapy box (this holds all the binders of data sheets, procedures, toys for procedures, etc.) along with one of the diaper bags and headed to the car. On the way I misstepped on a paving stone, twisted my ankle, collapsed to the ground and threw everything I was holding into the dust. It hurt. I yelled again. And mostly out of frustration, I teared up a bit. Both ankles hurt now. I didn't know which way to limp. Does it really have to be this hard to leave the house in the morning?

I felt bad for yelling and scaring Lu. I hate it when I do something stupid like that. Her little face looked so frightened. When I dropped her off at school she started crying again. So far this year her drop offs haven't been too bad. But this day she just didn't want me to leave her. Myffy was in the stroller and started crying too. I hate leaving her when she's so upset.

After school Nima came over for a couple of respite hours in the afternoon. I was trying to pay bills, balance checkbooks and upload videos. Lu didn't like me being upstairs when she was down stairs. She was upset. It just wasn't working. I came down after a bit, dressed her in her pink tutu swim suit and Nima filled up the kiddie pool in the back yard. Lu said she needed potty (awesome as we're still working on potty training). I took her. She did. So I said good girl and sang her the potty song. And when we were done washing hands she held her arms out so I knelt down, gave her a big huge hug and said "I love you."

I say this to Lu a lot. Sometimes she hugs me when I say it. Sometimes she puts her cheek out for a kiss. Sometimes she ignores it completely. The one thing she has never, ever done before is say it back. Yesterday she said it back. Loud and clear enough for Nima to hear it through the open door, Tallulah said "I love you." My heart swelled up so big I thought it was going to burst.

I wasn't sure if I would ever hear those words from Lu. It's one of those things you read about autistic children, that they never say it, never express it, but here she was doing it, saying it, smiling! And I guess you could suggest that she might just have been echoing my words back to me (echolalia is a phase a lot of autistic kids go through as they become verbal), but I don't really think so. She looked right at me and smiled. Like she knew what it meant. Or at least had an idea. And she didn't have to say it. She's not said it so many times before. But whatever the reason, it is what it is. My daughter said she loves me. Oh my little Lu, I love you too.

Monday, September 27, 2010

Myffy's Milestones!

Being a second child myself I was determined that I would not let my second child's milestones pass uncelebrated and her childhood pass undocumented. I had the best of intentions to photograph and video and write about and shower her with as much attention as I possibly could without completely abandoning the first child. Unfortunately my plans for raising Myffy, like my plans for raising Lu, have pretty much all been derailed by Lu's autism. Even though Myffy is with me always, her childhood is being spent in therapies and appointments and strapped into her carseat as we go in between. The only pictures and video I ever manage to take of her are quick, on-the-fly and taken with my phone (the above wonderful picture was taken by my friend Tamlyn Corrs back in May). Yet inspite of all the ways that I feel like she's being short changed in this deal, Myffy is absolutely thriving.

She is growing in size and strength and skills in a way that seems amazing to me. The only other child I've ever watched develop step by step is Lu, and as we now know that wasn't quite typical development. I guess that knowing Myffy has a 1 in 5 chance of being autistic because she has an autistic sibling (as opposed to the 1 in 110 chance every other child has) I'm watching her development like a hawk. After watching Lu have to painstaking learn every little thing step by step in discrete trials rather than absorbing it from her environment the way typical children do, I actually feel astounded that any of us are able to learn all the things we normally do. The development of little brains is amazing.

And Myffy's little brian is doing amazing things. Right now she's approximating Mama, Dada, Nigh-nigh, up, down, more, bath and she's doing the signs for nurse and more. Every now and then during Lu's therapy Myff will try to say a word Lu is working on then we all clap and cheer for her and she does the hip-hip-hooray arms! She is a speed crawlyer, a sturdy stander and a competent cruiser. She's getting really good at comandeering people's fingers to help her walk around. And her own unique little personality is bursting out in so many ways. She's getting really opinionated about things, and loud and demanding. And it is awesome.

Yesterday was Myffy's 1st Birthday Party. It was soooo fun! Myffy was so excited to have so many people around the house all day that she absolutely refused to take a nap and consequently fell asleep during the BBQ, right before cake time, and because we had so many little ones over who needed to head home for their own naps and evening routines, we actually cut the cake without her. Which meant that she missed seeing her name misspelled on her cake. I had called it in to Baskin Robbins and repeated the inscription over and over "M as in Mike, Y as in Yankee, F as in Fred, F as in Fred, Y as in Yankee. Somehow it came out "Happy 1st Birthday! Go Myssy Go!" I'm sure it won't be the last time her name is misspelled. But I will make sure to either check the cake myself or remind Stew to check the cake when he picks it up from now on. But Myffers didn't mind. She thought it tasted great. And looked super cute eating it. Thanks to everyone who came over and helped out!

Go Myffy Go!!!

Wednesday, September 15, 2010

Walking for Autism Speaks

Ok, so I know I said I'd be posting whenever I find the time and I haven't been posting at all, but the truth is that I really have had very little time to spare. A quick recap of the past few months: therapy, appointments, driving to and from therapy and appointments, getting trained to do therapy, interviewing other people to train for therapy, trying to find respite workers, negotiating with the school district for aides and a PO for our therapist to oversee the in-school program, changing hab and respite providers, looking for more respite workers, meetings with DDD and CFSS, videoing therapy, uploading videos of therapy, talking to tech support about uploading videos... I should probably stop there. I know it sounds like I'm complaining, and maybe I am just a little, but I realize all the time that while I'm working hard, Lu is working even harder. She is such a little trooper and has so little unstructured time for a 3 year old.

But with a little bit of time that I know we'll find somewhere the fam and I have decided to do the Walk Now for Autism Speaks. I've got a fundraising page at

If you're able to help out please donate there or I have a tab on my facebook page too. We all really appreciate any support you can give. This money will not be impacting Tallulah's life directly at the moment, but it does go to research for the cause and cure for autism.

I've heard a lot of different opinions about using the term "cure" in reference to autism because I know a lot of people on the high functioning side of the spectrum do not like the idea of being cured, however for those on the lower end of the spectrum, particularly those who are non-verbal and require constant care, the word cure does not sound like such a terrible thing. Even if the research just turns up newer and better ways to get an earlier diagnosis this will help countless children get proper early intervention, earlier than before which can completely change the course of their lives. So whatever the terminology and whatever the politics, more research needs to be done, and your donations will help.

On a personal note, after six months of intensive (and I mean INTENSIVE, close to 40 hours a week of grueling, drills in Discrete Trial Training ABA and hours and hours Pivotal Response Teaching) therapy Tallulah has started school! She is in an integrated preschool program at Cromer Elementary School and her lovely new teacher is Mrs. Kylie Good.

I was excited and really scared about her starting school. What would it be like for her? Would she like the other kids? Would they like her? Would she even notice they were there? She's come so far in the last six months with all kinds of things, like labeling, IDing, learning to request things she wants, following simple one step directions, and so many other things. And it is a half special needs preschool. I felt pretty sure her newly acquired skill set would land her somewhere in the middle of the special needs group anyway. At least that's what I thought.

I'll be honest, the first week of school was rough. Lu's full time one-on-one aide did not get back from Argentina in time to start school with her so I went with her as her aide for the first week. At the end of the first day I managed to very calmly walk Lu out of the school and through the parking lot to the car where I fastened her into her car seat, got in, started the car, and then broke down and cried quietly while she watched the Fox and the Hound in the back seat. I thought "this isn't going to work" and "she's just not ready". I felt that hard rock that seems to represent her autism form again in my chest making it hard to breathe. Breathe. Swallow. Breathe.

I know that I should never compare her to any other kids anywhere, let alone in her class, half of whom are typical peers, but I just couldn't help it. All the other kids were speaking for a start and speaking in sentences too. Talking and learning about the days of the week, the months of the year, and the weather outside, all things that Lu has not concept of yet. The other children followed directions. Sat quietly when told to wait or stood quietly when put in a line. They were able to tell the teacher their favorite food and color. Lu knows the names of some foods, and she knows the names of some colors, but the word 'favorite' doesn't mean anything to her right now and she won't name a food or color without seeing at least a picture of it. No other child had a tantrum all day. Lu had 11. I won't go into it all, but it was rough. Really rough. But the second day came. It was better. Then the third. And by the third day I started to have hope.

The next week her aide went with her. I did too the first day, but then slipped out the next day. And the next. And this week her therapist Kristen Gaisford came back from Nevada to check up on Lu's school program and made several small but very important modifications. She showed the aide and the teacher how to modify the materials and the language so that Lu could participate in learning something about what the other kids were learning, but at her own level and her own speed. She started to succeed. She enjoyed it. And now I really think that school is going to help. Especially the social aspect of it. I feel like her ABA therapy can teach her a lot of skills, but being one-on-one with an adult, it can't teach her to be interested in other kids. It can't teach her to want to make friends or to make one. Oh please let her make one. Maybe not right away, but please some day.

Today was picture day at school. I admit it, I fussed her. I french-braided the front of her hair (something that would have been impossible just a few months ago), put the back in pig tails and put her in a really pretty dress. She looked so cute. I'm excited to see how they turn out. I put the last really cute photo I have of her at the top of this post. You can't see it but I was tickling her on the floor while a friend took the shot to try to get her both smiling and looking at the camera. She doesn't really like cameras, but I really want pictures of her. Sometimes secretly tickling while the picture being taken is the only way. But like other things, this too seems to be getting better.

She's working so hard. She's doing so well. I love her so much.

We'll be doing the Walk Now for Autism Speaks on Halloween morning in Phoenix. I think I'll go ahead and get costumes the girls can do the walk in. Hopefully they will like dressing up. We didn't really do Halloween last year because Myffy had just been born, and the year before I dressed Lu up as a pumpkin but the costume was itchy and she didn't really like it or wear it very long. This is probably the first year she will remember. I wonder what kind of costume she would like. This is the kind of question I can't wait for her to be able to answer. Some day I will ask her "What do you want to be for Halloween" and she will look me right in the eye and say "a princess" or "a cowgirl" or "Buzz Lightyear" or something. And it will be great. It will be so great!

Thank you so much for your support.
Jen, Stew, Myffy and Lu

Friday, July 23, 2010

Autism in Flagstaff AZ

Ok, I've decided to go ahead and try to post on this blog whenever I find time. I titled this post Autism in Flagstaff AZ because I've been trying for months now to make contact with other families with autistic children in Flagstaff and am having a really hard time figuring out how to reach any. Are there any here? Any besides the families I've met at the NAzASA meetings? Any with young children? Maybe even young girls? Are you out there? My hope is that with this title my blog post might show up on a google search. Those are the words I first searched for after getting Lu's diagnosis, when we were trying to figure out who to turn to and what to do. So if you've googled those words and are now reading this blog, please contact me! I'd love to talk to you.

Also I wanted to let anyone interested know that our super-fab friend John Stanley is running the NY Marathon in November and has decided to sponsor our local chapter of the Autsim Society of America (NAzASA) as one of his charities. Pretty cool, huh? Here's a link to his fundraising site: Please give if you can!

It's 3am now so I'm going to keep this post short. The girls have gotten really good at never sleeping at the same time so I'm in desperate need of sleep and only came to the computer to get my newly recharged ipod to listen to audiobooks to lull me back to sleep. The most tragic thing about the current familial sleep disorder is that when they finally do both get to sleep and I have a chance to do some sleeping of my own, my mind sometimes takes over and keeps me awake for a few hours more. Sigh.

Thursday, June 24, 2010

To post or not to post

So I've been a bit paralyzed lately about this blog. I haven't posted in so long and so much has happened since the last post. Do I try to find a way to catch up on everything that's happened in the past 6 months? Or do I just start again from here and try to go on? Either way the focus of the blog will have to change. It's still about my sweet little babyracer girls, but now it will be a blog about autism. Do I want to do that? Does anyone need it? Is it fair to Lu to blog about her life, her struggles, as well as mine? And do I have the time? I thought I was busy before- before the new baby, before the diagnosis, but it's nothing to how busy I am now. I guess we'll see. I don't have time to write a catch up on the past six months now anyway. Maybe I'll try to do an abridged version some day. But for now, I'll just post this.

Monday, January 25, 2010

Myffy is already trying to talk!

Ok, so I was just saying in that last post that I don't have any photos of Myffy, but here's a quick little video I took of Myffy on my black berry and managed to get into the computer to post here. The quality isn't great, but I'll try to get something better up soon. Cute isn't she? She's trying so very hard to talk! I'll try to keep up with posting a bit better this year.

Closing out 2009

Well, once again it has been months since I've posted anything on my blog, so I'm going to just put up a few photos from the end of 2009. Somehow we ended up with almost no photos of Christmas morning! How did this happen? I guess we were all too busy soaking up the fun to grab the camera more than once or twice, but here are a couple of cute photos of Lu with the tree and some pressies. Thanks to everyone who sent stuff to the girls. They had a really great time!

In November Lu took a riding lesson on a very nice horse named Irish. She was in horse heaven! But it ended up being more of a ride than a lesson, so we decided to take her for rides now and then but to wait to start real riding lessons until she is a little older and understands more about holding onto the reins and everything.

She sure looks cute in a riding cap!

Here is Lu visiting the Prescott zoo with her Daddy. She loves wearing her pink cowgirl hat and pink cowgirl boots when she's out with Daddy and he's wearing his hat and boots too.

Here's a cute one of Lu and a deer at the Deer Park! She really loves being able to get right up close and interact with the deer. Even if they are sometimes a bit aggressive about getting food.

And here's one more cute pink cowgirl hat photo of Lu and Mommy with Myffy still in the belly. I realize that there are no photos of Myffy in this post and I will do another post with photos of her soon. The problem I've discovered with having 2 kids is that the camera is almost never within reach when they do something cute and photo worthy these days. It seems like my hands are always too full of kids and kid-related things to hold a camera as well. If I didn't have a camera in my phone I'd have almost no photos of Myffy at all! And that's the reason there aren't any photos of her here, I haven't gotten them out of my phone and onto the real computer yet. Poor Myffy. I'll have to explain to her someday, just as my mother explained to me, that fewer photos does not mean I love her any less.