babyracer

Relaunch of the Babyracer Etsy Store

2012-01-23T14:05:00.000-08:00

Back in 2008 I first started this blog as a craft blog connected with my babyracer etsy store. I was trying to adjust to life staying at home with an infant out on our ranch where I was very isolated. I mean really isolated. And I'd always loved doing crafts, so I started crafting, posting things on etsy, and doing the blog along side. The focus of the blog shifted when Lu was diagnosed and I didn't feel like I could spend time on crafting. But now I've decided to reopen my etsy store to try to help raise money to get Tallulah's Autism Service Dog.

My kids have a lot of cute clothes and they seem to grow out of them so very quickly. I saved all of Lu's clothes because we knew we wanted at least one more baby, and even though we put aside thoughts of a third child after Lu's diagnosis, I still saved all of Myffy's baby clothes too.

Which is a good thing because I've decided to make my new project upcycling all of the best, cutest and least worn clothes into fun new pieces for other kids to enjoy. I'm trying to do it with only the craft supplies and the clothes that I already have so I won't be putting any money into it that could be going to the dog, and any money we get out of it will go to the dog. And we'll all be saving the planet a tiny bit by reusing clothes that still have a lot of good wear in them.

I wouldn't have imagined that I would be able to find the time to do this project, but the upside of Lu's recent incessant sleeplessness has been that I have had this strange time in the middle of the night during which I can't really do anything that requires real thought (like my taxes say) but I have found a real meditative solace in sitting beside her stitching while she colors and plays in the dead of night. The pictures shown are some of the projects from these nights.

It's kind of a slow process day by day, but I hope you will check out the store and come back again from time to time to see what else I have been able to get in there. I'll try to keep putting more and more items in as I find the time and come up with new little designs. Everything that has been upcycled is in the upcycled section. Thanks for looking and thank you for your support!

www.babyracer.etsy.com

Disneyland and the Dog

2012-01-18T20:17:00.000-08:00

Stew finished branding the short-age calves early today and picked Lu up from school. When he got home he called out to me and seemed so sad as I came down the stairs from my office. He told me that he got to the classroom a little early and that the kids were still in circle time. All of the kids except for Lu. (She was at the back of the classroom with her aide.) And they were talking about Disneyland. He teared up a little. I asked him what was wrong and he told me that he hadn't realized until today Lu was the only kid in the class who couldn't talk.

I had to stop and think for a minute. I tend to not think of Lu as being completely non-verbal because she has a certain set of words that she can and does say, but the idea of an in-depth conversation about the coolest aspects of Disneyland is definitely way beyond her capabilities. She doesn't even know what Disneyland is. Requesting toys, movies, bath and bed are the basic functional extent of her vocab. But I knew what Stew meant. I've had those moments myself. Lots of them over the past couple of years. Sometimes we both get so caught up in her world, in how hard she works and how much she does and how far she has come that it's a shock to see what just naturally happens with so many other children her age. I didn't want to say there-there and pat him on the shoulder, or remind him of how far she has come or any of the other things that popped into my mind at first. Instead I decided just to talk about Disneyland.

When I was a kid I loved Disneyland. No, wait, I LOVED Disneyland. Especially Mr. Toad's Wild Ride. The first time I went on that I really thought that I was driving the car and crashing into everything. It was definitely a magical place for the 5 year old me. But the idea of taking our kids to Disneyland has been beyond impossible. Until now...

Why you might ask? Because of Booth.

Booth is the fantastic and amazing big black German Shepherd that we met for Lu through Arizona Goldens. Arizona Goldens trains and places service dogs. Seeing-eye dogs, hearing dogs, wheelchair assistance dogs, and (most importantly for us) Autism Service dogs. I fully intend to write a post completely dedicated to him and our fundraising efforts to get him for Lu next, maybe even tomorrow or the next day, with photos and everything, but for now let it suffice to say that the possibility of his presence in Lu's life and all of our lives makes the idea of traveling somewhere actually seem possible again.

Not long ago Lu hid in the house. This is something she does with some regularity. But this time it was different. It was just me home with the girls, Stew had to stay the night out on the ranch. Lu asked for some cookies so we started to bake. She got bored, wandered off, and as I put the cookie tray into the oven I realized it was quiet. FAR TOO QUIET. Myffy was playing nicely with her Toy Story dolls in the livingroom, and I thought that Lu had headed that way, but where was she now? 10 minutes of looking calling, shouting, yelling, screaming, pleading, begging commenced. I couldn't find her. I just couldn't find her. I looked everywhere she normally liked to hide. I checked all of the closets, bathrooms, bedrooms, in cupboards, under sinks, behind toilets, everywhere! I checked and rechecked all of the doors and windows. All locked. She couldn't have gotten out and locked them behind her. She had to still be somewhere in the house. But I was stumped. What if she found a way to get into the heating ducts? Or some crawlspace I didn't know about? We only moved into the house in October. Maybe there was something I didn't know. I started to think about what I would say to the police when I called them and then I heard it, a thump on the bedroom wall. She had to be in the walk-in closet. I'd already looked in there several times, but she was smart and climbed in behind my shoes in the section behind the door swing. The only way I could see her was to close the door and get down onto the floor to look behind the shoes. And there she was, curled up behind my warm wooly slippers.

This happened at home, in a place where she was safe. But what if we had been at Safeway or Target or Disneyland and someone walked between us breaking the grip of our hands? What if she managed to get out of sight for even a second because someone tripped and fell or my attention was momentarily diverted by Myffy falling over or something? What if she hid in a place that was so open and unsafe that I could look for days and never find her? The thought of even trying to navigate an airport with her feeding tube and potty issues (she does great at home, but strange toilets can be scary- I have to always carry her diamond printed princess seat with us for her to ever go in a new toilet) has been beyond us for so long now. But we started talking about it. About bringing the dog. And a respite worker if one of the girls who works with her would want to come. We could stay in the hotel right there at Disneyland so we could leave to go do her feeds and still go back afterwards to see more stuff. And the dog is trained to be tethered to the child. They could be connected to each other so that she could not get away from him and no one could separate them. If we had the respite worker come too, just to help with hand-offs and potty sits and diaper changes for Myffy and getting meals and everything, we could probably make it work. There was suddenly a very small light at the end of a very long tunnel.

I tried to imagine it from Lu's perspective. About half of her world is tied up in her movies. All of her longest verbal phrases at this point are echolalia from the scripts of her favorite movies. What would it be like for her to meet some of her favorite characters in person? To get to touch them, hug them, hang out with them for awhile? I have heard that Disneyland is great about giving autism passes so that she wouldn't have to wait in line. Not that she would be tall enough for any of the rides. But still, just the place would probably be so amazingly magical to her. And if she tried to jump off of the "It's a Small World" boat because the water looks so inviting, I'm sure that between Booth and us and the respite worker, we could stop that catastrophe from happening. We could keep her in the boat and get to the end of the ride. And if she gets too tired or overwhelmed and needs a break, we could go back to the hotel for awhile. Yeah, I really think we might be able to make this work!

As we went over all of this Stew brought up the fact that Adam Ant is playing in Anaheim, CA on our wedding anniversary, Oct 20, 2012. I'm not sure that we will have raised all of the funds for the new dog by then ($15,000 for the dog and $3,000 for the two weeks of bootcamp to train us and all of the Hab and Respite workers to become handlers for him). Or that we or Lu will all be ready by then. But it gives us something to shoot for. Something to look forward to finally. A fun time for the kids and a bit of fun and crazy for Mom and Dad too if we can swing it. It's worth a try at least.

If you are interested in helping us raise the funds we need to get Booth for Lula, please go to:

http://www.youcaring.com/fundraiser_details?fundraiser_id=428&url=helptallulahgetanautismservicedog

Any and all help is greatly appreciated. Please repost or send to anyone you think might want to help. And stay tuned for more about Booth! I have so much to say about this amazing and wonderful dog!

Thank you!

Credit where credit is due

2012-01-09T10:26:00.000-08:00

I wanted to write a quick post to give some credit where credit is due. I realize in the last post about wanting to get Lu an autism dog I may have sounded disappointed about her progress. And while I do wish that we were able to have conversations right now and that I could communicate things to her like the danger of moving cars and deep swimming pools and strangers and all of the things that give me cause to worry about her safety right now, I still have to look back at where we were two years ago and realize just how far she has come.

Two years ago this month was when Stew and I were finally forced to confront the fact that something was going horribly wrong with Tallulah's development and had been for nearly a year. We could no longer tell ourselves that all kids develop differently and that talking late wasn't such a big deal, plenty of people talk late and are ok and that everything would get better when the new baby came. We could no longer let everyone else tell us those things either. We could not delude ourselves anymore. We asked our pediatrician for a referral to the Arizona Early Intervention Program fearing that she may have been going deaf, but with no idea exactly what was going to happen next.

Two years ago Lu made no eye contact, said only 4 or 5 words but only when she felt like it, never upon demand, she did not respond to her own name, she did not seem to hear us when we spoke, she spun, she flapped, she had tantrums daily, sometimes hourly, she actively tried to hurt her sister, sometimes herself, sometimes us, and seemed to be completely out of our reach.

Fast forward to today and I can see a little girl who a generation or two ago probably would have been recommended for institutionalization and probably would have gone through life mute, has now acquired so many of the skills she lost and has gone on to gain so many more. She can now get her most basic needs met through one word requests like potty, hungry, dress, water, horse, car, etc., and can be prompted to put many many words into short sentences now. She repeats relatively long phrases from films and even if she does not yet fully understand what she is saying, I firmly believe that at some point she will. And often she says these movie phrases within a context that kind of makes sense. Like shouting "Ow! Why would you do that?" from How to Train Your Dragon at the top of her lungs when we bring her into the waiting area at the hospital. I can tell you we got plenty of looks for that one. She also plays much more appropriately with her toys now and at times even interacts a little with the other kids at school, and sometimes even with Myffy. She has started to show more interest in other people, including Myffy, Stew and me and a few times has even done things like come up and pat Myffy when she was crying and say "it's ok, it's ok" which is what I often say to her when she is crying while I pat her. The other day Stew pretended to cry when something happened and Lu came right up to him and put her hand on him and said "don't cry" which was pretty amazing. Her tantrums have reduced in number and intensity. Her repetitive behaviors and violence had dramatically decreased. In short she has progressed greatly in every area that has been targeted by her many therapies.

I could go on and on with all of the amazing things that she has learned to do, but it would take a long time and the point of this post is to give some credit to her amazing BCBA, therapists, tutors, Habilitation workers and Respite workers who do so much to help both our girls and us. I won't name them individually because I didn't ask permission to publish all of their names, but they are amazing. Every week day at 7am one of the tutors arrives to do one-on-one ABA therapy with Lu. On weekends they arrive at 8am. Lu does therapy 7 days a week, 5 to 5 and a half hours a day, plus preschool three days a week for 2 and a half hours a day with one of the home program tutors as her one-on-one aide in the classroom, plus speech and OT each one hour a day, one day a week. All of this therapy and school adds up to a total of 46.5 hours of per week for Lu (more than an adult's full time job). And another 15 hours of one-on-one ABA for Myffy plus her hour of speech each week and her 15 hours or preschool each week. Needless to say, a village is helping to raise both of my kids. And without this village who knows where we would be, the kids, our family, us parents, all of our sanity. We owe so much of what we have today to all of these wonderful people who pour in so much time and energy and enthusiasm and love to the work they do with our kids. Thank you all!

It's time for an Autism Service Dog

2011-12-17T20:52:00.000-08:00

Lu has been helping us decorate the new house for Christmas, and I finally finished all of the paperwork to apply for Lu to get an autism service dog. It was a lot of paperwork and required a prescription from a doctor as well as a letter of medical necessity, but we did it all and are now waiting to hear back about our application. Based on all of the information that I have gathered I am quite certain that Lu will be approved for the dog so we are starting our fundraising efforts now. I know that this will probably sound insane to most people but the cost of a service dog is between $10,000-$15,000 over the lifetime of the dog depending on the particular needs that the dog is trained to meet. The company that we are working with, Arizona Goldens, told me that no one ever just buys a service dog, everyone fundraises for at least six months towards the purchase of their dog. Our hopes for the ways in which this will improve Tallulah's life are many, but the major point for me is safety- she has no understanding of the dangers posed by moving vehicles, deep water (we have started swimming lessons but she cannot yet support herself in the water which does not stop her from running fearlessly off of the edge of a pool), strangers and putting things into her mouth that she shouldn't, both food items which are forbidden by her restricted EE diet and non-food items which could be dangerous. She is also what is knows as and eloper- one who is wily, escapes and wanders. We are constantly on red alert and put her school aide and therapists and tutors on red alert to beware of her tendency to wander.

We are also hoping that the dog will be able to help her with transitions from one environment to another. Our most speculative hope from reading testimonial accounts, is that the presence of the dog at the foot of her bed might enable her to sleep in her own room and put herself back to sleep when she wakes throughout the night. Right now Tallulah still sleeps in the same room as us, her tiny bed pushed right up against ours so that she has to walk over me to get up in the night so I will wake and be able get her back to bed or follow her. I have had so many people ask me why I don'd just let her go when she gets up at night, but Lu is a danger to herself at the best of times and wandering around alone in the dark is just a recipe for disaster that would most likely lead us all to the ER. I would much rather lose sleep by keeping her safe than lose sleep by taking her to the ER in the dead of night. The idea that the dog could help her with sleep is mainly based on observations of autistic children with night terrors and nightmares. Lu rarely if ever wakes screaming or fearful, so I am not sure that this is the source of her incessant sleeplessness, but the effect of her sleeplessness on the entire family has reached such a critical point now that I would buy the dog just for that purpose alone if someone could assure me that it really would help her sleep. Even just a little. Still, even if that benefit does not materialize all of the other potential benefits of the dog make it something that we are now ready to pursue whole heartedly.

I have to admit here that although Lu is doing awesome in her therapies and is now rocking it at school three days a week, I have slowly come to the realization that all of this incredibly intensive, expensive and beneficial therapy is not likely to result in her being able to reagin skills to the tune of shaking off her autism diagnosis as I have heard of other children doing by the age of 5 or 6 or 7 or 8. It is not many, not the majority, definitely the minority, that are able to regain age appropriate skills to such an extent that their autism is no longer classified as a disability, but of course, like all other parents pouring their hearts and souls and every waking hour and life savings and money from family members and anywhere else they can get it into programs like these, it was our hope that Lu would be one of the lucky few. I don't mean to belittle her accomplishments by any means. She was dealt a terrible hand by genetics and fate and has made Herculean gains through sheer will and force of effort. But still she is autistic. And I have to face the fact that she will be all her life. So we have to make plans for that. We have to plan for the future. For her safety and security and quality of life. What happens to her if something happens to us, her parents, her caregivers and supporters who understand her when others most likely will not? The dog is not a solution to all of this. We have a lot more work to do. But the dog is a start. Hopefully it can be with her for many years to come and will help to make certain parts of her life easier and more comfortable for her. And for Myffy as well, who is also doing awesome in school and in therapy, but who is also showing very real and definite signs of being affected by autism.

So with this in mind we have decided to start our fundraising campaign. From now on all sales of our music in physical or digital form will go towards the purchase of the autism dog. Physical copies of records and cds available directly from us can be found at http://indiepages.com/boyracer/mailorder.html. We have drastically reduced the price of many of these physical copy cds, some as cheap as just a couple of dollars so it's cheap and easy to stuff the stocking of any indie-loving loved one. Digital versions of most of the cds we have made over the years as Boyracer, Jen Turrell, Steward, Mytty Archer, Tricia Yates Fan Club, Possum Moods, Grey Tapes, Fog and Ocean and the rest can be found on iTunes but Stew has also made some great bandcamp sites with rarities to download directly from us at: http://boyracer.bandcamp.com/ If you want to donate to the dog besides getting music, you can do so through the Let Me Hear Your Voice song link on the Boyracer bandcamp site. It has a choose your own price tab. Anything from $1-$10,000 will be gratefully accepted. I'm just kidding about the $10,000. No single person should ever actually contribute that much. Below is a photo of Lu from August of 2008, a few months before she began to regress into autism. Get a load of those great big dreamy eyes.

Stew has also made a Milk and Alcohol bandcamp website for more recent releases at: http://milkandalcohol.bandcamp.com/

And over the course of the next year Stew will be putting up all the out of print 555 singles at http://555recs.bandcamp.com Right now there are only a few up there but if you check back from time to time we will eventually get all 50+ singles up there as he finds all of the master tapes/discs/reels.

Sorry to do so much promoting of our websites and music here, but we have to do all we can to get the dog, so I am also planning to relaunch my www.babyracer.etsy.com store in the new year. I have decided that rather than giving away the kids outgrown clothes (some of which only get worn once or twice before they grow out of them) I'm going to upcycle the best stuff with silk screening, embroidery and applique. I have so missed being crafty and can now get crafty for a cause.

So please, if you have the time, money and inclination, please check out some of these websites to help us get the dog for our girls. Every penny you spend will go to a very good cause. We appreciate every penny and every positive thought.

Thank you,
Jen

Myffy and MSG

2011-12-07T09:28:00.001-08:00

Back in October, just after we first moved in to the new house, we had two waves of Australian visitors, the second of which included the Mia Schoen Group (aka MSG). The Mia Schoen Group played with us (one more of Boyracer's many last shows, and a surprise showing of The Young Untold since Ara was in town to play with Boyracer) at Mia's Lounge in Flagstaff. The show was great fun and it was so good to get to spend time with old friends. The kids loved having so many people around and so much happening every day.

The video above is Myffy's audition to join the group as they were setting up to rehearse. What do you think? Should she get in? Or maybe she should form a band of her own! I always thought that Lu would eventually do Tallulah Missoula, like Hanna Montana. Maybe we need a sisters group for the two of them instead!

Tallulah and the microphone

2011-11-29T09:25:00.000-08:00

Tallulah really likes playing with Microphones, so Stew took the opportunity of having a mic hooked up to a little amp to get some good language opportunities with Lu! She's doing really well with echoing language. This was filmed a few months ago in the summer out in Lu's playroom on the ranch. Go Lulah! Go!

Fall fun

2011-11-27T07:00:00.001-08:00

I love the Fall. Fall and Spring, my favorite times of year. Bright and crisp, cool in the mornings and evenings, warm when you stand in the sun during the day. Stew and Lu enjoyed a little time on the trampoline on Friday. Weeeeeeeeeee!

Go Myffy Go!!!

2011-11-26T07:31:00.000-08:00

I thought it might be fun to try to upload a few videos of the kids here. I do occasionally take videos on my iphone but never think to post them. If this works I might post a few more from earlier in the year.

This was from back in the summer when it still made sense to wear short sleeves and shorts in Flagstaff. I think this was Myffy's first time trying to walk Wheezy all by herself. I think she did a pretty fantastic job! Go Myffy Go! Go Myffy Go!

Halloween

2011-11-04T01:52:00.001-07:00

Lu loves dressing up. She loves her ballet clothes with frothy tutus. She likes princess dresses. So of course I thought, she'll love Halloween. But I should probably know by now that when I set up an expectation like that, something is bound to go wrong. Lu did not like Halloween. She did not like it at all. She only stayed dressed up for about 20 minutes, refused the gluten free/ dairy free pizza that she is now allowed to have from Picazzo's Pizza and spent the entire evening somewhere between quietly weeping and loudly crying. Finally, after we were out of candy, turned off the lights and went to bed, she whimpered herself to sleep as we cuddled. I think it was just too much, too confusing and I think she kept thinking that I was going to leave her. Chock that one up to a good lesson. Hopefully next year we can find a way to make it feel safer and be more fun for her. Myffy and Wheezy had fun dressing up at least.

Bearizona and BFFs

2011-10-08T09:17:00.000-07:00

Last month Lu went with her preschool class for her first ever full day field trip. The class went to a wild animal park in Williams, AZ called Bearizona (yes, the focus is on bears). She had to be gone from 9am-2pm which meant for the first time ever, she had to do her tube feeding in front of her classmates. I was a little nervous about this and was thinking of going with the class myself to make sure that everything went ok, but Stew volunteered so I could still take care of getting Myffy to and from her preschool and therapies.

While Lu was at Bearizona, something wonderful happened! There have always been a couple of kids in Lu's class who are a bit interested in her, and who can be roped into doing social games with her, but on this day it seemed that she really and truly made a friend. Everyone was so excited about Lu and her new friend that Stew, Lu's aide and Lu's teacher all messaged me pictures of Lu and her friend holding hands as they walked around the park!

They walked around, they danced with each other, they sat by each other during lunch and generally had a good time together! For those of you who don't really know Lu, this is a very big and very awesome development!!! Lu has always been generally nice to other kids and has even had moments of having a passing interest in some particular kid or another, but her interest in this little girl has gone on past this one day and she still gravitates to her in class and always wants to hold her hands. I am super excited about Lu's new friend, but still can't help feeling just a little nervous about the idea that she could soon get tired of holding hands and dancing all the time without speech. She is a typically developing little girl who just happens to be very sweet and very patient, but I imagine that when she plays games with other kids, they talk, they pretend, they decide to have rules in their games when they play. And even though Lu has come so far since last year, she still isn't quite up to all of that.

Hopefully that is just needless worry and other kids will accept and appreciate my sweet little Lu for the wonderful person she is. Conversation or no conversation.

Myffy's Birthday

2011-10-07T20:10:00.000-07:00

I feel like the longer it has been since the last time I posted the harder it is to muster the energy to do it. So instead of trying to catch up I'm just going to start with Myffy's 2nd Birthday and then maybe try to put up a few other posts with photos of cool things that have happened since the last post. So here are some photos from Myffy's Birthday! We have two cakes because I ordered one from the super awesome Big Ring Bakery in town which is gluten free and was able to make cakes to our specification for all of Lu's dietary restrictions, however the first cake was dropped and he thought he would not have time to make a second, so Stew made a really nice spice cake with a mix we got at the health food store and we even found a passable frosting that we could make using whipped coconut milk and oils instead of dairy so the cake on the left is the homemade cake, and the cake on the right is the cake that Bret from Big Ring was able to whip up last minute for us to replace the dropped cake. Both were great!

Myffy Sure liked them both!

She also like sitting and bouncing on the balloons until they popped!

And jumping on the trampoline!

And kissing her Woody doll.

And playing ball with Daddy.

And cuddling with Mommy.

Thanks Tamlyn Corr for taking awesome pictures of the Birthday!!!

Great Kids, Great Animals and Great Times this Summer!

2011-07-22T21:33:00.000-07:00

Ok, after that kind of heavy and emotional last post, and the last couple of posts having no pictures, I wanted to write a more light-hearted catch-up with lots of photos! So this first photo is the one I've been using as my Facebook profile photo lately. One of the few family photos we have with all of us and the kids happily riding on Cinnamon. What an awesome pony!
In other news, Lu has started ballet! She loves her real ballet shoes and tights and leotards and tutu skirts. And she loves running around dancing in front of huge mirrors to the music from Rio.

This photo with the awesome pink and zebra striped hat is a hospital photo from Lu's last scope. After which she was declared free from Eos!!! And this next photo is Boo Boo Kitty, the newest addition to our ever expanding family.

This next photo is from one of our evening visits to the Ranch HQ to see horses and calves before bedtime. It's a nice way to let the kids run around, see some animals and wear themselves out before bed. And this photo of Lu eating an ice cream pop, well this is the result of adding soy back into her diet, opening up a whole new world of food, including some much better frozen desert options.

One thing that has not been going quite so well lately is the number of times Myffy has been sick and had to visit the doctor's office. This picture of her sitting on a purple chair is her waiting for the doctor to come in and see her. I guess it's being in preschool for the very first time, but she seems to get sick about twice a month. And the last photo, well this is my mare MissE (in honor of Missy Elliot), her son Bullseye (he will be one in August, what a big little guy) and the sweet little Myffers admiring them. Great kids, great animal friends and great times this summer!

Thanks for reading!

The R-word and a few other things

2011-07-19T12:22:00.000-07:00

I read a great Stark Raving Mad Mommy post this morning titled Domestic Enemies of the Special Needs Mommy and wanted it to post a link to it here: http://www.rantsfrommommyland.com/2011/07/domestic-enemies-of-special-needs-mommy.html. But I have to admit that I do so tentatively. I really love her blog, her frankness, her humor in the face of difficulty, and her ability to say things that I might think now and then but usually don't say because I would feel like I was attacking people who don't know any better and possibly attacking people I know well, like and even love. Because the thing is, it was only about a year and a half ago that I only vaguely knew what autism was because of a few articles popping up in Time, Newsweek and parenting magazines. (I remember reading that Newsweek article when Lu was 6 or 7 weeks old and thinking, wow, that sounds so awful. I can't imagine how horrible that must be. Little did I know I was about to find out.) Before experiencing this first hand, I had no idea what this side of the world is like. I did not know who these kids were or all of the ways in which the world can seemingly turn on them and their families when they are dealt a difficult hand.

Often when someone says something insensitive or inappropriate, or sometimes even just outright rude and mean about our kids or our parenting of them Stew gets really angry and says "Don't they know what we're going through?" To which I have to reply, "No, of course not. And not all that long ago neither did you." The truth is that if one of my close friends or family had come to me to tell me that their child was diagnosed with autism the way Stew and I did back in April of 2010, I'm not sure that I would have known the right thing either. And honestly there isn't really an exactly right thing to say at a time like that. I'm sorry or I'm thinking of you all are probably the best. But most responses fell into one of two categories. Both of which I responded to badly. The first was the disbelief/denial category of telling me that autism is horribly over-diagnosed these days and that they are SURE that Tallulah is not REALLY autistic. Doctors just like saying that. It's probably just a phase. All kids do those things. It's nothing to worry about. The second category was the 'I could have told you something was wrong with that kid ages ago' category.

My response to the first category was anger. Do you really think that we would have gone through all of this, all of these referrals and appointments with neurologists and psychologists and early intervention screening/evaluation panels just for fun? Do you really think we would lightly and purposely try to get our daughter diagnosed with a serious and life long condition just for kicks or attention? No one wants to believe that something is really seriously wrong with their own child. We went through months of denial and excuses and trying to find explanations of what was going on with her before finally resorting to the professionals to help us out. We exhausted every avenue we could think of before arriving at this very difficult moment of telling all of our nearest and dearest what is going on with our child and our family. We would not be doing this if the diagnosis were not certain. And believe me, the doctors do not want to tell this to any parent alive. I actually found it really frustrating how long it took for anyone to even say the word autism to us because they are all so hesitant to make the pronouncement until they are completely and absolutely sure. Can you imagine having to give this kind of news to someone? Short of 'I'm sorry but there has been an accident...' or 'I'm afraid the operation was not a success..' this is about the worst bad news anyone ever has to give to anyone else.

My response to the second category was also anger. Oh really. You knew my child was autistic all this time and just sat there on that information, wasting valuable early intervention time? You were able to identify this before her parents, pediatrician, and even the Early Intervention program and psychologist? It took months of tests, observations and evaluations to come to this conclusion. And yet you could tell just by looking at her? And the thing is, that even now, most people still can't tell just by looking at her if they catch her in a calm and engaged with a toy moment. She has no physical markers of disability (unless you can see the Mic-Key button of her G-Tube protruding through the front of her dress). She is incredibly cute and after over a year of intensive 35-40 hour a week behavioral, speech and OT therapies she now is able to at least briefly look most people in the eye. She can even be prompted to say 'Hello ______' to most names and 'Bye Bye' when it is time to go. I imagine that it is possible that for people who work with autistic kids every day, Lu may have been an obvious case to some. To me however, who hardly knew what the word meant, I didn't know what autism looked like and having someone tell me that they knew something was wrong with my precious baby girl all along, when I only had doubts and nagging fears that I pushed aside most of the time, well I guess it hurt my feelings and my pride in trying to be a good mother.

So what I really want to say to everyone who responded to me in those first few days, weeks, months and who I may have driven away with my anger about whatever response you had: I am sorry. I am truly sorry. The wound was still too fresh. I was in too much pain. I know that you were trying to be helpful and offer comfort, but my eyes were just too glazed over to see it and accept it. I was like an animal with her foot in a trap; ready to bite anyone, even a hand offered in aid. So please, if you are a friend who has been out of touch since I bit your head off over comments about Tallulah and autism, feel free to get back in touch if you want. The special needs world is isolating and we can all use all of the friends we can get. And for the most part I am not nearly as sensitive about things as I was in those first few months. I have grown accustom to so much that was foreign back then. Only a few things make me flinch now and bring tears to my eyes.

Which brings me to one last point I want to make. It is about the R-word. I feel like middle school was the main time in my life when I heard it a lot. 'That's retarded', 'what a retard', 'yeah you're special... SPECIAL ED!'. It fit right in there with Polack jokes, fat jokes, gay jokes and the rest. I don't remember ever saying it much, or really any myself, but I do remember tolerating it, laughing a long, just like everyone else. The special education room at my school was for the profoundly disabled. Children in wheelchairs, children who could barely move, who could not feed themselves, who could barely if at all speak any words. I didn't understand their conditions or their lives. It bothered me if someone used the word about one of them because they so obviously had no control over their situations, but regular kids calling each other retard seemed kind of harmless back then. I obviously was not the most sensitive kid regarding this, but I didn't feel like I was among the most insensitive either. Fast-forward 30 years. Not long ago I was hanging out with someone I care about deeply who tossed off the word like it was nothing in conversation. 'Oh my god that is so retarded!' I know she didn't mean to upset me or anything but it hit me like a wave of ice. I fumbled through trying to explain that you just can't say things like that anymore and she was mystified. But Tallulah... 'Oh she's not retarded!' I explained that her diagnosis of autism does include mental retardation. 'Oh come on, she's not. Just look at her. You can tell.' But the thing is, you can't tell. Autism is a developmental disability. Lu's mental age is significantly younger than her physical age. The Department of Developmental Disabilities through which we get so many of Tallulah's services was only recently renamed. It used to be the Department of Mental Retardation. So please at least think about this. Don't call your computer retarded when it isn't working right. Don't call your boyfriend retarded when he forgets to call or txt. Don't call yourself retarded when you forget to do something really important. Because what you mean is faulty, stupid, defective, non-functional. What you mean is an insult. And what the word actually refers to is my sweet Tallulah and other people like her. It is hurtful and demeaning. And we are all better than that.

No Eos! Hip-hip-hooray!

2011-07-07T22:56:00.000-07:00

It's taken me awhile to get around to posting this because we have been so busy, but the results from Lu's last biopsy came back just before the 4th of July weekend and we were thrilled to get the all clear on her throat. No Eosinophilic clusters in her esophagus at all, which means that whatever it is that has been causing the reaction in her is one or more of the foods we have eliminated from her diet. Which means that this condition can be managed by managing her diet. Yay! A big step in the right direction.

The Next Step: so now the next step is the trial and error of adding back one food at a time and testing her after each addition. We are starting with Soy. The reason is that adding soy back into her diet opens up so many gluten free/dairy free foods that have been off limits so far. We toyed with adding back one of the big guns: wheat or dairy, but the truth is that those are the most likely culprits and the idea of giving her back some of her very favorite foods in the world only to take them away again 90 days later sounds pretty terrible. We still aren't able to adequately explain any of this to her and without explanation it just seems cruel and so hard for us all. She has become so determined and so sneaky lately. So good at finding ways to get her own way. Right now she is somewhat content without the things that have gone from her diet. She asks for some of them now and then, but it's not too bad.

So we'll add soy back first. It makes a difference to her diet, but not such a drastic one. She can have miso and tofu again. She can have soy ice creams and rice dream. She can have a few more kinds of dark chocolate that had soy lechtin in them. There are a few kinds of cookies and crackery things she can have. We'll try it for 90 days and schedule the next endoscopy to test her again. If this goes well we'll add nuts back next. And then probably eggs and see where we are. We'll keep trying and hoping.

And now off to bed.

Tallulah's Birthday and Project Pony

2011-06-10T21:42:00.000-07:00

Have I ever mentioned that Lu loves horses and ponies? If I haven't, well let me mention it now. And if I have, I will reiterate: Tallulah LOVES horses and ponies. For as long as I can remember horses, ponies and their cousins zebras have been pretty much her most favorite animals. And since she had to have a Birthday party with out cake, ice cream, pizza, hot dogs, burgers, and all sorts of other things most kids get to have at their parties, instead we focused on hiring a pony. Lu was in heaven.

The party was going pretty well for Lu even before the pony arrived. She was excited by the balloons and people and presents and things. I don't think she ever tried the chocolate fondue but she loved the allergen-free cookies my mom made. She was actually in a great mood the whole time. And because she didn't know the pony was coming, she didn't even realize it was an hour and a half late getting there, which was too bad for the kids who had to leave for naps and things. But for the kids who stayed, Stormy showed up and was a terrific treat!

Once Lu got onto Stormy's back she was fantastically calm and serene. She patted him as she rode and even leaned down to kiss his mane a few times. When it was time for someone else to ride, she got off and let them ride but kept hold of his lead rope and walked the circuit with him, never letting him out of her sight. She pet his nose. She hugged his neck. It was wonderful to watch her being so caring and loving with him. There was no doubt in our minds, Lu is a true horse lover.

I've heard and read a number of things about autistic children and equine therapies. We even took Lu to one person who claimed to be that and I left with the impression that what we needed to find was a remarkable horse and we could do without the therapist. That therapist at least. So after watching Lu with this pony Stew and I made up our minds, it is time to get Lu a pony of her own. And so began Project Pony! The search for the perfect pony for Lu. Gentle, kind, bombproof, small, not too old so they can bond and grow together for several years, but not too young either.

We wanted a pony that she could ride for several years, and then if she gets serious about riding she can move onto something bigger and Myffy could keep riding the pony for a couple more years. For those of you who may not know us very well, we live on a ranch with cattle and horses, so one more tiny mouth to feed isn't that big of a deal for us. I'd also like to say to anyone who thinks we are spoiling our kids by buying them a pony, how many times have your kids had to have birthday parties with no cake or ice cream or any of their favorite foods? How many times have your kids had to leave their own party to go be hooked up to a machine that pumps liquid amino acids straight into their stomachs? And frankly, with an autistic child who has a hard time engaging with and enjoying the world around her, I really don't think there is any such thing as spoiling her right now. It's kind of like saying you're spoiling your baby by responding to it and giving it your full attention 24/7. Babies need attention 24/7 and right now so does our Lu. And she needs a pony. Sorry if I seem a little defensive here. I've just had a few snide comments lately about all of the many things I do for my kids and the possibility that I might be spoiling them. The truth is that if I could do more for them than I am doing right now, I would happily do it. And they aren't spoiled. End of story.

So the search began. We looked at a number of different options and price ranges. But in the end we went with someone that Stew found through a friend who gets ponies from the Amish out east and brings them west to sell. Which means not only are they saddle broken, they are also trained to drive a cart. How awesome is that? I'm already envisioning Halloween with the kids in the cart Trick-o-Treating. When we arrived at the place in Chandler we were led out back to where the ponies were and Lu immediately gravitated towards Cinnamon and her baby, who was the horse the owner recommended for Lu. She has worked with some special needs children before and was just as calm and sweet as she could be. Lu ran up to her and reached way up to her back, trying to pull herself on. She walked around front and touched Cinnamon's face, she walked all around her, touching and hugging. The baby (who I want to call Nutmeg) was only slightly less calm than his mother and tolerated both girls walking around him, looking at him. He is about the size of our dog Wheezy, already halter broken and completely awesome! In the end we left with Cinnamon, Nutmeg, a cart, harnesses, a saddle, bridle, halters and all the tack. It was a deal and a half and Lu couldn't have been happier. A successful conclusion to Project Pony! Coming this summer: Pony Party BBQs out at our ranch on the weekends for all of Lu's and Myffy's friends!

Tallulah's Birthday during National Eosinophilic Disorder Week

2011-05-16T22:28:00.000-07:00

This week is National Eosinophilic Disorder Week. I have to admit that until just a couple of weeks ago I did not realize that such a week existed. The fact that Tallulah's Birthday is during this week feels poignant indeed. How do you make a Birthday Party without Birthday Party food? I don't know why I'm so hung up on this, but one of the first things that really got me about Lu's EE was the idea that she couldn't even eat her own Birthday Cake. I remember thinking about it back in January and today it is hitting home harder than ever. Because Lu LOVES Birthday Cake. Anything that looks fun and frilly or has whipped cream on top she points to and calls 'Happy Cake!'- her term for Birthday Cake. She has been pointing to things she can't have and calling out names for them a lot more these past few weeks. And she has also been eating a bit more of the things she can have along with her tube feedings each day. It is encouraging. I'm happy to see her appetite returning and her interest in real foods renewed. But the things she asks for are Happy Cake, toast, egg, yogurt, milk, cookie and ice cream.

For Lu's autism we practice a kind of therapy called PRT during her downtime from other ABA and speech therapies. It's a child led approach where you basically watch to see whatever the child wants, even if it is something that involves a repetitive behavior or obsession because you want to find the things that motivate the child most and use those motivators to create language opportunities. What it comes down to in the eye of the casual observer is that we pretty much give Lu anything she asks for. If we can get her to say it, we give it to her immediately. I have been criticized for this by other parents. 'You can't just give them everything they ask for. They'll walk all over you.' Yeah, easy for you to say with your typically developing child who is able to ask for everything under the sun. If Lu ever gets to the point where giving her what she asks for becomes a problem and seems like spoiling her, well I will be the happiest spoiling parent ever! And we will cross the bridge of teaching her she can't have everything she wants when we come to it. For the time being the focus is still convincing her that there are enough amazing things in this world that it is worth the time, trouble and effort to speak.

However, her renewed interested in food does put a bit of a damper on all of this. She is clearly and loudly asking for things she sees other people and other kids have, but we won't reinforce her requests with the things that she is asking for. I can see her get frustrated. I can see her get mad. She is trying so hard to get through to me, and I do understand, but still I say no. I worry sometimes about messing up the therapy by refusing requests that at any other time we would have fulfilled. How can she understand why I won't give her a glass of milk? I used to give her milk all the time. And suddenly I won't do it anymore. Once she even broke down in tears and wailed "Why? Why?" when I wouldn't give her milk. What (*@$% expletive) mother won't give her kid milk?

I hate EE. I hate it. I want to feed my baby. I want to feed her real and normal food. I want to give her the same kinds of foods that she sees other people eat every day. I am so grateful for the feeding tube system that is keeping her alive, that allows her to grow and thrive, but I hate not being able to give her the food she wants to eat. I want to let her have her favorite ice cream Birthday Cake.

I know there are recipes, there are things to try. I have tried some, but it's just not the same. And after our foray into the world of GFCF diet, I think that Lu might be a little like me. I would rather not have coffee than drink coffee black. I love cream. I love sugar. They are at least half of what I like about coffee. Maybe what I really like is coffee flavored sweet cream. When we tried all the substitutions on Lu it seemed that she would rather not eat those foods than eat the dry, dense, different versions. She would rather eat entirely different food. Or no food at all. Which brought us to the tube.

So what are we going to do for our baby's Birthday Party? The idea we settled on was a chocolate fruit fondue. We found a pretty good chocolate that is completely allergen free. I need to test out how it melts and coats things. But she loves chocolate strawberries. I figure we can just have several trays full of fresh fruit and dip thing after thing into the chocolate. That could seem pretty special, right? And maybe we can try to make some homemade ice cream out of rice milk and frozen crushed fruit or something. And she can still have popcorn and certain potato chips. I better figure it all out pretty soon. Her birthday is tomorrow and the party is on Sunday.

Happy Birthday Baby! 4 years old. Such a big girl who has already been through so much.

Myffy Preschool Update

2011-05-02T22:28:00.000-07:00

Shortly after that last post I got a call from The Montessori school to say that they had a spot for Myffy at last. I was expecting them to say it was a spot for Fall Enrollment, but amazingly they said she could start that next Monday! So she did. Unfortunately Lu woke up at 2:30am that morning, which is not unusual in itself. I always call the hour between 2:30 and 3:30 the witching hour because Lu almost always wakes up then, but if she doesn't, then we're usually good on through to a normal morning hour. The unusual thing about this morning was that she never, ever went back to sleep. I took Lu into the other bedroom in the hopes that at least Myffy could get a little more sleep before her first day of school, but it made a rough morning for all of us. I dropped Myffy off at 8:30am with her hat, coat, change of clothes, sunscreen, lunch box, indoor shoes, outdoor shoes, hand sanitizer, tissues, snacks and all the other things they ask you to bring on the first day of preschool. She was kind of interested as we hung her coat, hat and lunch box on the peg under her name, but then the moment she realized I was leaving her there, this new incredible, earth-rending wail that she has developed lately burst from her and the screaming fit began.

The door closed, but the sound followed me all the way down the hall and through two sets of doors, faded away as I walked around the building, but then met me again through an open window as I got into my car and drove away. I glanced in my mirror. Both car seats were empty. I was alone in my car without any kids. It felt really strange. Like my heart involuntarily jumped a little at the sight even though I know neither kid should be there right then. I headed home to where Lu was doing her ABA therapy and would need me to do her tube feeding in a couple of hours. I spent the next 40 minutes doing all kinds of things I keep meaning to do around the apartment but never seem to find time to do, until the phone rang. It was Myffy's school. I could hear Myffy screaming in the background, just as she had been when I left her. She hadn't stopped. They suggested I come get her. Poor baby. Crying like that for a whole hour without stopping. When I got there she was still crying. And she was exhausted. When she saw me her face lit up, she lunged out of the teachers arms and started yelling "Momma! Momma!" I took her into my arms. She quieted down. The crying reduced to sniffing while I talked to her teacher about the best way to ease her into all this. Then Myffy pointed and said "Culla (aka color), culla" referring to the easels where some of the kids were painting. At least she noticed that there were fun things to do in the classroom.

On Wednesday I cancelled my dentist appointment and cleared the whole morning so I could stay at school with Myffy. She started crying as I took off her coat this time and clung to me when we went into the classroom, but I sat down with her, let her sit in my lap, and cuddled her until she calmed down. After awhile Myffy got comfortable with me there and started venturing out a little. Just a few steps at first, then she turned back and launched herself into my lap with a "Momma" and a smile. Then a few steps more. Then she went to check out the birds. And then the fish. And then the instruments. And then the painting area. After two hours I got up to leave. She got upset again, but it was time to go outside right about then and the teacher told me afterwards that she really liked the rabbits and the garden. She cried a little more when she went back inside, but she cried herself to sleep so they put her down for a nap. They didn't call me until she woke up at 1pm.

The next several days we decided to have her stay form 8:30-10:30 each day and each day it got a little bit better. The hard thing about waiting for them to call and tell me whether or not I need to pick her up is that I either have to pick her up before 10:30 or wait until after Lu's tube feed and I've dropped her off for her afternoon preschool class all the way across town and drive all the way back which makes it around 1:30 before I can come back for Myffy. We're fitting in both of their ABA, Speech and OT therapies around these 3 day a week preschool classes. Today was Myffy's 3rd Monday in a row, and today she stayed at school from 8:30-2:30 with a nice big long nap in the middle. She started crying when I got her out of the car, and tried to hold on when I left her there, but when I arrived to pick her up, she wasn't crying or upset at all. She was standing on a step stool helping the teacher wash the dishes from snack time. The teacher sudsed them up, and handed them to Myffy, and Myffy held them under the tap to rinse all the soap off. She didn't even see me come in. I got to stand there and watch her for a few minutes before she turned. When she saw me she smiled, put her dish down carefully, stepped down off of the stool and ran to me for a great big hug. Go Myffy Go!

Autism Awareness Month!

2011-04-11T21:47:00.000-07:00

April already! Mid April at that. The past couple of months have gone by so fast I've hardly had time to catch my breath much less blog about it all. But April is Autism Awareness Month so I want to get at least one blog done in April.

A quick recap of what's been going on lately:

Spring Break (March 13-20th) was awesome. We spent it in Phoenix going to sessions at SARRC (Southwest Autism Research and Resource Center) Mon-Fri from 9-3 each day. The evenings were spent as much as possible by the pool. Once again we stayed at Lu's favorite hotel with the lovely big water village where we can order food and drinks right at the pool. Nana and Granddad Anderson arrived from England that Wed and stayed in AZ through the end of the month. It was great to see them and for them to get a chance to reconnect with Lu and really get to know Myffy. The last time they were here was the week Myffy was born, so Myffy had most of her life to catch them up on. It was great fun.

Going to SARRC always makes me wish that we had a place like this to take our girls in Flagstaff. The facility, the playgrounds, the preschool, the therapists, the staff, the kids, everything is awesome and I want to stay there all the time. We brought Myffy in to work with our therapist Alex as well as Lu now that Myffy has officially been categorized as "At Risk for Autism" by the Arizona Early Intervention Program. The type of Applied Behavior Analysis used at SARRC is called Pivotal Response Teaching or PRT and has been a great method to pair with the Discrete Trial Teaching program that both girls are doing in Flagstaff. PRT is child led and can be done anywhere at anytime and does not require props or data sheets in the moment.

Basically, you watch your child to see what is motivating them moment by moment- for instance does Lu seem like she wants to get out of the door. Once you identify the motivator, take control of it- put your hand on the door handle, then set up the language opportunity- "Open door?" and then be contingent on her saying "Open door" before opening it. There is more to it than just that, task variation, using models, questions and time delays to try to illicit spontaneous initiations by the child, but that is the very basic jist of it. The interesting thing is that Myffy responded to this method so well. She really took to it and loves it. And her vocab has been shooting up thanks to this week of training. Which is fantastic! Thanks Alex and SARRC!!!

After Spring Break was over it was back to Flagstaff and back to normal therapy and school for Lu. We have lost yet another tutor lately, so that always makes things difficult. Luckily we are training some great new people right now and I think overall the program is getting better and stronger with time. There just always seem to be these little setbacks. But Lu is doing well at school. She is responding more to the speech therapist and her teacher though she still responds most to her aide. And she is taking more of an interest in the other students. She has even on occasion decided to start hugging the other kids in class. All of the adults respond to this by going ahhhhhhh, that's so cute! Which makes both her and the other kids do it more. We're super happy to have her reaching out to the other kids and wanting to interact with them. But the hugging did start to get a little out of hand in terms of disrupting class (you can't have kids hugging for 20 minutes out of 2 and a half hours) so we've decided to limit it to one hug per kid. That's a socially appropriate parameter. Plenty of people hug their friend to say hello. But to keep hugging, that could get a bit awkward. And not all kids like to be hugged.

I'm still trying to find a preschool placement for Myffy. Haven Montessori is our number one choice, but the wait list there is just so long. We've been trying to get Myffy in since last summer and there is no spot for her in sight. I'm hoping to hear this month that they will have room for her next fall. Fingers crossed. She really needs to have some time with her peers for peer modeling and social development. And I think she would totally love preschool. She always gets so mad when we drop Lu off and she doesn't get to stay too.

April 1st was the Northern Arizona Autism Conference. Stew and I attended. Stew spoke on a parent panel. I managed to see a few talks and go to a few workshops which were all great! I had to miss a bit to go back and forth to the apartment in order to nurse Myffy and do Lu's tube feedings. But it was definitely worth while. Our friend Laura Nagle, who was the President of the NAZ Autism Society of America last year gave a couple of fantastic talks and there was a showing of the trailer of the documentary movie that is being made about her. The film is still in the process of being made but you can see the same trailer on her website here: http://www.lauranagle.net/Film.htm They actually are still raising funds to finish the project and could really use any support you might be able to give.

And not to bombard you with donation requests or anything, but I have also just set up a fundraising page for Team Tallulah! our own team this year to raise money for Walk Now for Autism Speaks. This is the organization that raises money for research into the causes and potential cures for autism as well as work on finding new and better diagnostic tools to diagnose earlier and better treatments to help individuals and families reach better lifetime outcomes. It's a worthwhile cause even though it will probably not impact our girls directly. Hopefully they will find answers for the generations to come. If you would like to join Team Tallulah and walk with us, please go to www.walknowforautismspeaks.org/arizona/teamtallulah and click on the join us link. If you cannot join us in person but would like to show your support with a donation, please go to www.walknowforautismspeaks.org/arizona/jenturrell and make a donation. Any amount you can afford would be greatly appreciated.

Thank you all for reading and caring.

Lu's Progress and IEP Battles

2011-03-05T17:07:00.000-08:00

Lu has been doing great. Her feedings are going well. She is visibly gaining weight (thank goodness). She sometimes even eats some popcorn or bacon by mouth while tube feeding. Her disposition seems to get happier and more affectionate day by day. The site of the G tube itself is still causing a few problems. It still seems to be painful when the tube is attached and detached so she resists until it is either in or out and then pretty happily hangs out during the feed. A few days ago the skin around the tube looked very odd on one side. By the next day that bit of skin had swelled into a strange shiny red swelling that almost looked like stomach tissue was coming out through the hole. I completely freaked out. Luckily one of Lu's tutors is a nurse and was able to tell me that this is called Granulation Tissue and that it is not uncommon as a wound like this heals. Apparently it is not dangerous in itself, but because of its location it was causing her button to no longer lie flat, allowing stomach contents, including acid, to seep out onto her skin, which meant that it had to be removed immediately. Poor Lu. One more trip to a hospital, one more minor procedure. We waited a couple of hours to get in, but burning it off with Silver Nitrate took all of 50 seconds or so. It looked strange for a day or two, the burned skin sloughed off, and now it looks pretty normal again. If you consider having an open hole in your stomach normal.

So with all of this progress on the feeding and recovery front, we decided it was time to try to take Lu back to school. Especially since her ABA trained one-on-one aide was scheduled to leave Feb 28th and we needed to get a new person in place. Our preference would have been to get one of the home-based tutors into the classroom with Lu because they all have a good and long behavioral history with Lu and they are all well trained and well aware of the new medical issues. I would also feel so much safer leaving her with them than with a new stranger who she is not used to. But none of the tutors had Mon, Tues and Wed afternoons free. We thought about one of the tutors doing Mon and Wed and me doing Tues, but both the teacher and Dr. G didn't think this was the best idea. It took us ages to get her used to me dropping her off every day. Me staying every other day could really confuse her. Then the school said they had someone they wanted to hire. I was impatient to get someone in place so they could shadow the current aide and get trained by Dr. G who very awesomely agreed to fly out almost immediately to do the training. The school assured me this new person was really great, had experience, was great with kids and they would send her resume. I had some misgivings, mainly about a completely new person knowing how to safely handle Lu's flop on the floor tantrums without injuring the new button. And about toileting since she still isn't independent in the bathroom. Potty training has been really tough (especially with all of her GI issues) and throwing a stranger in there could be a big problem. And I was worried about a new person being able to get Lu to comply with doing meaningful and worthwhile work in the classroom.

I'm not disparaging Lu's teacher with this last comment. I think her teacher is a good one, but at the moment Lu is still not able to learn in a group environment, so her aide is really her teacher in the classroom. She translates and modifies what the teacher is teaching the other kids into something that Lu can benefit from at her current developmental skill level (which although improving, is still far below that of the other children in the class). The aide also pulls Lu from the group after she has spent a certain amount of time in the circle or after she has completed her task because she doesn't get much from waiting while all of the other kids do their tasks. Instead she does discrete trials that Dr. G writes for her at a table in the back, and the aide has to run these trials, provide reinforcement consistent with her home program and take accurate data. These trials are where she actually gains most of the skills that the other kids are able to learn from just hearing a few times in a group setting, and hopefully this will help her to some day catch up with her peers. The aide also does social skills building exercises with Lu by recruiting another student to run protocols that teach Lu to ask another child for a toy she wants, and give another child a toy when asked and to play appropriately with toys with other children. This is something that she cannot get from her home-based program because there are no other kids her age to learn from at home. So the aide position is super important for Lu's education. Without an aide she might as well not be at school.

So after discussing the aide position problem with Stew and Dr. G at length I confessed my misgivings and that nagging feeling that something was wrong and this just wasn't going to work with the person the school wanted to hire. We all agreed that if I wasn't comfortable, then we wouldn't do it. One of the other tutors from the home based program offered her Tuesday afternoon (I hadn't thought to ask any of them for just a Tuesday afternoon, but when I said I was going to go every Tuesday she said she could instead) and we made a plan to have two home-based tutors replace the one school aide. Hooray!

So we had a plan, we wrote to the head of special education and our IEP team to let them know the new plan and were told that unfortunately their candidate had already been hired. Because of hiring policies at the school district, a job posts, is open for a minimum period of time, candidates apply for it, and once it is filled the posting closes and that person has to be allowed a 90 day probationary period during which they cannot be dismissed without grounds. Obviously we had no grounds since she had not yet even started. However Lu's IEP does state that she must have an ABA trained aide. To make a long story short, we spent the past week with Kris training two new tutors for Lu's home-based program and trying to train the new aide provided by the school, but in the end it just didn't really work out. No one warned the potential aide that she was expected to do training and tutor hours outside of school hours and we did not feel confident that she would be able to handle all the complexities of Lu's program without those additional hours.

So finally, after meetings and phone calls and more meetings and emails it was decided that our two tutors who we wanted to be hired will attend with Tallulah as volunteers until we can get their paperwork processed for hiring, and in the meantime the other aide will also attend school since Lu has to have a hired aide. And once the paperwork all goes through, it will just be our tutors as her aides.

I got the feeling several times as we went through all of this that some of the people involved were a bit baffled about us kicking up such a fuss about who her aide is and how well trained they are for the last three months of a preschool class, but the thing they don't understand is that right now Lu is in a developmental window of opportunity that will pass and will never be open to us again. Numerous peer reviewed and reproducible studies have shown that the lifetime trajectory for kids who are able to attain real functional speech before the age 5 is vastly different than for kids who don't. The kids who talk by 5, those end up being the ones who are often called 'recover' and who are able to go to school and learn and have many more options for their future lives. So every day, every hour right now counts. And that is why we have pushed in all our chips on this ABA program, on finding the right aides for her, on trying to give her every tool possible to help her gain skills and make progress. That's why we are fighting so hard for our baby.

Settling In

2011-02-23T23:10:00.000-08:00

It has been just over 2 weeks now since Lu got her tube installed and started on the Elecare amino acid diet. We've had a few hiccups and it's been a steep learning curve but for the most part, it's all becoming routine now. Mixing up the food, cleaning the equipment, administering the food, cleaning up the equipment, cleaning the stoma around the button, putting gauze on and taking it off. Because we feed her every four hours and each feed takes an hour we really have to plan in time for each feed and the cleaning around it into all of our activities each day.

So far we've been trying to have Lu lie down for the feeds because the wound has not yet healed and it seems painful for her when we mess with it. Lying down is the easiest way to get to it, get the food in and get it out again without the tube getting yanked on or caught up in anything. Hopefully we will eventually get to the point where she will know to be careful of the tube and the IV pole and can sit up at the table to feed, or have the pump going while she does therapy, or sits in her car seat in the car. But for now, we keep her quiet and still. Which means she has been watching lots and lots of movies.

She has actually watched so many movies now that she seems tired of watching movies; something I never thought I would see. We try other things too, flashcards, reading books, but movies usually seem to hold her attention the longest.

It has also now been over a week since we moved into our new apartment. We haven't really moved out of the ranch or anything. Stew still has to be out there most of the time. But after a year of driving the girls in and out and in and out of town, staying over at my mom's and renting a small office space for therapy (where the other tenants complained about the noise of kids doing therapy because they are trying to conduct business next door) we decided that it really was necessary for us to get our own place in town. The two hour round trip drive in the car to get to and from town each day was such wasted time in all of our lives, but especially for the girls. It was two hours of the day when they could space out into autism land and we want to give them as little of that kind of time as possible. Plus it is so much easier for them to receive services for speech, OT and ABA therapies without needing the therapists to drive all the way out to see us some of the time. Just paying for everyone's time to get out to see us was getting to be too much.

So here we are now, settling into our new place and our new routine. Unfortunately a few other new things have come up at the same time, like Lu losing her very familiar and well trained one-on-one classroom aide as of the end of February. I won't pretend I'm not alarmed by this. The thought of sending her into school with this new button in her belly while it is still sore and unhealed with a stranger to look after her is causing me a lot of distress. For the last two days I went with her and stayed with her at school because I just couldn't bear to leave her after all she's been through lately. I was worried it was too soon to send her back. We're scrambling to find someone new, get her trained and in place as soon as possible. I just wish there wasn't so much new stuff for Lu to take in all at once. Any one of these things- surgery, new button in her belly, tube feeding instead of food, moving into town, or a new aide on it's own would be enough to throw most autistic kids off their game, but all of it coming together in less than a month, whew. Luckily Lu often surprises me with her toughness and resilience. I'm sure we'll work it out and make it through some how.

Lu's super awesome BCBA Dr. G is coming back next week to train the new aide and some new ABA tutors for her. Thank goodness. I always feel like things are getting out of control with Lu's program just before Dr. G comes back, then she's here for a week, whips everything back into shape, and by the time she leaves I feel like I can handle things again. That sure happened on her last trip here when she started working with Myffy. I've been feeling much better about things with Myffy lately. And much more stressed about things with Lu again.

But one of the most amazing thing through all of this has been watching Lu respond to having nutrients in her body. So many crazy things are happening to her and around her and yet her moods have been for the most part great. She's been super sweet and cuddly. She's even hugged Myffy and held her hand on several occasions without being prompted to do so. And I can see her growing again. During the week in the hospital and the week before she had lost a lot of weight. I could feel her spine through her clothes and count her ribs when I dressed her each day. And while I can still feel the spine a little bit, the ribs have a bit of flesh on them and her belly goes slightly out instead of being concave. Her color is great. Her eyes are clear. I've actually managed to take several pictures of her looking right into the camera now which was something that almost never ever happened without spending hours trying and trying to get a picture. I can't wait to really get going on her therapy program again to see if being nourished helps her with that as well. I hope so. I really hope so.

Oh and one last thing, we've had a lot of snow lately! Both girls have been pretty excited by this. Lu particularly loves kicking it with her cute pink cowgirl boots. She will go way out of her way to reach a pile of snow and kick it. She also likes standing under the eaves as they drip ice cold snow melt onto her head. I've been trying to discourage that. And eating the snow. But here's what the snow looks like out the window of the new place. All nice and white and fluffy.

Now time to get some sleep before Lu's IFSP meeting with DDD tomorrow morning. And then we need to start thinking about her IEP meeting with the school board next week. Gotta love all the acronyms in autism land.

Lu and her G Tube

2011-02-20T19:38:00.000-08:00

Whoever it was that invented the G Tube deserves a great big smackeroo on the lips from this grateful Mom. I won’t lie, this past week was terrifying. And each day Lu’s surgery was delayed by her RSV I couldn’t help wondering if this was really one last chance for me to call it all off. Was it really the right thing? Did it really have to be so drastic? I wanted to help her, but here we were about to have someone install a semi-permanent hole in her body, right into her stomach. How much was that going to hurt? How long would it take her to heal? How well would it work? How hard would it be? But the more we talked to all of the wonderful Docs and staff at Phoenix Children’s Hospital, the more we were convinced that this was the right choice for Lu. Things were past the point of us hoping she would come around and start eating. The time for action had come. G Tube time.

Lu was admitted to the ER on Monday and tested positive for RSV. This put her up in the isolation ward (after waiting in the ER for about 10 hours to get a bed) where everyone had to wear masks and full gowns around her all the time (except for us of course because we were already contaminated) which I think freaked her out a little bit. What kid wouldn’t be freaked out by a bunch of masked and yellow gowned grown ups sticking them with needles and putting cuffs on them that suddenly inflated and put pressure on their legs and put little lit up bits of tape that glowed on their fingers and toes periodically? I probably would have been freaked out too.

She was really dehydrated and low on nourishment when we checked in so she submitted to most of the prelims with some protest, but calmed down and cuddled with me in between each round of testing, questioning, and vitals taking.

I was amazed at the ease with which the staff got her first IV in. It took just a moment to get the needle in then on went the arm supporter and all kinds of tape. Because she tends to try to get IVs out they end up taping it up so much it looks like she has her arm in a cast.

Tuesday was spent in debate, everyone trying to decide whether or not to go forward with her procedures or get her in better shape and discharge her until she got over the RSV. It was a tough call. Her resistance was extra low from being sick, but I was also afraid of being sent home with no reliable way to feed her. In the end it was decided that she would have her upper GI Barium Scope at 10:30am on Wed and that the surgery would be scheduled at 2pm pending the results on the upper GI.

The upper GI was tough. She had to drink a barium drink so they could watch it move through her system and she did not want to drink it and lie still under the imaging machine. After seeing her early resistance the radiologist wanted to cancel it. He thought it was too traumatic for her and suggested rescheduling it, but the whole point of the procedure was to make sure that there were no obstructions prior to the G Tube placement, so I didn’t see the point in doing it later if they really were going to put the G Tube in that night. So we did it. Tallulah spit so much of the barium out in fighting that she and I looked like we’d had a barium bath. But eventually it passed through her system without showing a twisted bowel or other obstruction.

And so on to the G Tube placement. Don’t you just love those release forms they make you sign in the hospital before they take your child away from you? The forms that outline all of the many horrible things that might happen and what they might have to do in the worst case senario? My throat constricted and I clutched Tallulah to me as they read it out loud hoping she wouldn’t look up and see that I was crying. She didn’t. I signed. We cuddled until the anesthesia injected into her IV tube took hold and then they lifted her and took her away from me.

The surgery took a lot longer than they said it would. They said 30 mins. An hour later I was still waiting. Then another half hour. Worrying something went wrong. Just when I realized I hadn’t eaten in many many hours and got up to go grab something from a vending machine, the surgeon came out to tell me everything was ok. Thank goodness.

She opened her eyes a few times that evening/night, but mostly slept off the anesthesia. When she moaned in pain, they gave her morphine. She didn’t react well to this, slept too deeply, too hard and had some oxygen saturation level problems, which kept her in the hospital one extra day. (There was actually a really scary moment when her skin went grey, her lips went blue, the alarm was sounded and 6 people rushed in to her aid.)

But finally, on Friday, they taught us how to do her feeds and let us take her to the hotel with us in the evening. Because of the scare we wanted to keep her close to the hospital for one more night before heading back up to Flagstaff.

When we got to the hotel Myffy was so happy to have her sister back. Myffy hadn’t seen Lu since she was admitted. All week long Stew and I had been doing shifts since Myffy wasn’t allowed in the hospital (because of RSV season) and Lu of course wasn’t allowed out. Every morning when Myffy woke up she would look around and say ‘Tu? Tu?’. Little Sweetheart. We were all so happy to have Tallulah back. My Mom drove down to Phoenix to stay with Myffy Thursday evening so that Stew and I could have some time together in the hospital with Lu to learn how to operate the equipment and feed her ourselves. Thanks Mom! That was a great help.

Since getting Lu back to Flagstaff things have mostly gone well. We had a scary setback when she started throwing up the tube fed food for a couple of days. 3 out of 5 feeds coming back up was alarming. This was our absolutely last resort for feeding her. If she couldn’t be tube fed, what could we possibly do? But after talking to the staff at the hospital we made some adjustments: smaller portions fed at a slower rate; and then when Myffy threw up twice in the days following we realized it may have actually been a mild stomach bug. Since then she has been handling her feeds well and even eating a few things by mouth: a pediasure pop here, a few potato chips (only potato, oil and salt on the ingredient list) there, a few pieces of popcorn and some juice. We’re trying to encourage her to still take at least a few things by mouth so that she doesn’t completely dissociate eating from nourishment and feeling full. But the most amazing thing about all of this is being able to feed her, really feed her, for the first time in ages, possibly since weaning.

And I do feel that there has been a difference already. She's always been a happy girl, even through all of this trauma and trouble, but since getting these feedings she has seemed even happier. More clear eyed. More interested in the world around her. And even though she is in pain from the surgery (healing every day) hopefully the pain of her EE is lessening with each day that passes.

I wanted to take a moment to say thank you to everyone who has written to express concern, send love, and asked how they can help. We really appreciate every bit of it. Dealing with special needs can sometimes be so isolating that even just an email or voice message, even when we aren’t able to immediately respond, means so much. Thank you for reading. Thank you for caring. Thank you for the outpouring of love and support. We’re all doing so much better for the love being sent. And we return it all, even if we don't have time to say so. Thank you!

Eating Issues and the Feeding Tube

2011-02-08T16:44:00.000-08:00

Well, we didn't really expect this trip to Phoenix Children's Hospital to be a cake walk; taking a child to the hospital is never an easy thing, especially for surgery, but this trip has been particularly hard. And it came at the end of a particularly hard week.

I realize that I have a difficult time describing Lu's eating problems to family and friends. Eating is such a natural part of life for most of us, a life-sustaining and enjoyable part of life that I think it's hard for most people to even imagine what it is like for Lu. We've gotten a lot of well meaning advice to either let her not eat and then come to it when she's good and ready because, after all, no child will really starve themselves to death; or to strap her into a high chair and not let her leave the table until she eats because eventually she will eat, or to actually force the food into her mouth and make her eat, kind of like when you make your dog take pills. Like I said, I know all of this is well meaning, but none of it really works with Lu. And believe me, we've tried a lot of things- read books, watched videos, attended feeing workshops, tried to be strict, tried making food fun, painting with it, cutting it into funny shapes, arranging it differently on the plate, tried to let Lu pick things out and help cook. We have tried a lot. Lu's therapist Dr. G came up with what I think is a pretty good analogy to explain things:

Imagine being a 2 year old in terms of comprehension and being told that in order to grow you have to press your finger against a piece of hot metal every day. Maybe not hot enough to instantly blister, but hot enough to leave a small red burn every time. At first you might do it because your parents ask you to and it makes them happy, but after awhile the pleasure of making them happy will wane and the pain will overtake the pleasure and you will refuse to burn your finger. So your parents might try to entice, reward, even bribe you to touch the hot metal. And this might work for awhile too, but again, eventually the pain will win out and you will refuse to do it. So then comes threats and punishment, which again may work for awhile, but we are all animals and the adversity of pain will win out over the threats and punishment eventually. Especially if the pain increases over time, as it has with Lu as her EE has progressed. And I have always wondered if Lu actually connects the feeling of hunger with food. I'm pretty sure at this point that she connects food with pain, and it's possible that even if she realizes food relieves hunger pains, but the pain of eating may be greater than the pain of hunger. So this is why I don't think that allowing her to starve herself until she is ready to eat will work. She has been starving herself into the 'Failure to Thrive' category for ages now. Let's face it, the reason hunger strikes work in political situations is because it is really really hard to force someone to eat when they are determined not to. And I'm also not crazy about restraining, coersing and threatening her into eating when pain is involved because of the fact that I want her to trust me and believe me when I do tell her that something will or won't hurt her, is or is not good for her. I also want her to tell me when someone or something hurts her and have her know that I will believe her and take her seriously and do everything I can to fix the situation. I do not take this trust lightly. If I restrain and hurt her myself, meal after meal, day after day, what am I teaching her? That brute force wins? That I can make her do what I want/think is best because I am bigger? Or that her feelings don't matter to me? I don't want to teach her any of those things.

So anyway, these are some of the reasons that once she started refusing all food, and then finally water by mouth, we decided to pursue the feeding tube option. Like I said in the last post, we did not arrive at this option lightly. It took a lot of talk, a lot of time and a lot of tears to get here.

The thing is that once we got her down here to the hospital in Phoenix, we had to wait in the ER for about 10 hours for a bed to open up upstairs. And in the meantime, she tested positive for RSV. RSV, or Bronchialitis is basically just a really bad cold with lots of mucus and a chesty cough to most adults, but to kids, and especially infants, it can be pretty serious. Myffy got RSV when she was 2 and a half months only and it very nearly killed her. Right now there is an RSV outbreak at Phoenix Children's Hospital. Lu was put into the isolation ward and the G Tube procedure had to be postponed because they don't want to put her under full anesthesia with a respiratory infection. The GI doc and the surgeon are both supposed to see her tonight and make the call whether or not to still try to do the procedure tomorrow, the next day or to discharge her (assuming we can get enough food/fluids in her to sustain her) and reschedule the procedure for later. What a mess.

Here's the skinny

2011-02-06T12:33:00.000-08:00

Lu is getting skinnier. Skinnier and skinnier. We spent the past week trying to slowly introduce the new amino acid liquid food options into her diet and Lu responded to this, much as she did to our attempts at a GFCF diet so many months ago; with a hunger strike. She is now refusing pretty much everything but a few pieces of popcorn, a little bacon and some, not all, chocolate things. Normally she drinks one to two pediasures a day to help make up for the gaping holes in her diet. After trying to mix neocate chocolate into the pediasure, she has been flatly refusing both the mixed and pure versions. It is truly alarming. We're trying everything we can think of. We've even jumped to what I thought would be the last resort: steroid treatment. We've been doing the steroid/splenda slurry since Thursday with no noticable change. Each time she managed to spit some part of it out. This morning she fought harder than before, spit some out and then got so upset that she threw the rest up. We don't know what else we can do. We're out of ideas. Out of dietary options.

Which brings us to the new last resort: the emergency installation of a G-tube into Tallulah's stomach. We are not considering this option lightly. Cutting open her smooth, sweet, perfect little belly, oh god, it makes me sick just to think of it. I really did throw up last night as I googled and looked at photos of children with G-tubes installed. But what else can we do? Her normal intake was already below the nutritionist's minimum even before trying the new formula, and this new reduction places her in danger. A G tube could save her. It could allow her to get enough nutrition for the first time in years. It could even allow her to thrive. It's hard to imagine the word 'thrive' being used to describe Tallulah without the usual accompaniment of 'failure to' preceding it. I don't think anything we've had to do with either kid so far has been as hard as this. But here we are. What can we do but hope and move forward. Maybe she'll just need the tube for 6 months. Or maybe a year. Or two. Maybe by then she will be able to understand enough to make the decision to eat the foods she needs to eat to treat her EE. Or she can learn to use the inhaler for the steroids. It's not forever. It can be removed. But for now, it can save her life. We're leaving for Phoenix tonight and will try to get her checked in to the Phoenix Children's Hospital for feeding, rehydration, and to discuss the tube further with her doctor. She might even be able to have the surgery tomorrow. Then we get trained on how to use the pump and feeding equipment and how to care for the hole in her tummy. And then I guess we go home and start this new stage of life. My greatest hope is that with proper nutrition she will finally start to feel healthy. And that could make such a difference for everything. Without the pain she's been living with all this time, perhaps she will be able to focus better, learn more faster, take more interest in life, in other children, in the world. This could really make such a change for the best. I have to cling to that thought as we go forward. Here we go baby girl.

I Have to Admit It's Getting Better, It's Getting Better All The Time

2011-01-28T23:43:00.000-08:00

I've been singing that Beatles song to myself a bit this week. Like a little pop-mantra. That and 'Ooo child, things are gonna get easier. Ooo-oo things will get brighter.' Pop music for the tough times in life. And it's been working. That and the fact that things really are getting better.

Myffy did her first day of ABA last Saturday and has done it everyday since, just like Lu, and she's doing awesome. It's tough. She's always wanted to get up into Lu's chair because Lu got so much attention in the chair, but now that she's really there and has to stay and do work, well, it doesn't seem quite as exciting anymore. But she has had a lot of success and it's so cute to see her clapping and cheering for herself along with everyone else when she matches objects or imitates gestures. Go Myffy go! Go Myffy go!

I'm also really excited about the new Lineagen Genetic testing kit that I just received in the mail. My original intention was just to test Myffy, but after talking to a genetic counselor on the phone for awhile we decided to test Lu first since she has the confirmed diagnosis and see what comes up for her. Only about 20% of the test groups with a confirmed diagnosis of Autism test positive for the exact chromosomal abnormalities targeted by this test, so it's far from a sure thing, but considering our family history, Lu is a good candidate. If something shows up for her, then we'll test Myffy for the same thing. So we'll see how that goes. The point of doing the testing is to be able to get Myffy services earlier than Lu did witihout needing to demonstrate as much of a delay. Because the thing is that Myffy is really quite advanced for her age. She has a relatively large vocabulary and a lot of skills. In order to be eligible for the program that Lu is now benefitting from Myffy would need to either demonstrage a 50% delay for her age (which I don't think she has at the moment) or have an established condition, like chromosomal abnormality (Downs Syndrome for example or the Fragile X category of Autism) that puts her into an At Risk category for Developmental Delay.

Myffy went to the pediatrician this past week for her slightly late 15 month well check (she was sick last time we went in so it couldn't really be a well check then) and to get an AZEIP referral. That's Arizona Early Intervention Program. We started that process with Lu around this time last year. Which now seems so very long ago. So next week we have Myffy's allergy appointment Tuesday morning, her appointment with Lu's diagnosing psychologist Tuesday afternoon while Lu is in school, and the AZEIP intake appointment Wednesday afternoon, with therapy for both girls everyday all around those appointments. Stew is doing a two day parent training session at SARRC (that's the Southwest Autism Research and Resource Center) in Phoenix on Monday and Tuesday and will pick up samples of all the amino acid liquid diet options from the nutritionist at Phoenix Children's Hopsital while he's there. When he gets back we're planning to spend a week or so trying to get Lu on whichever drink is her favorite, and then the next week will start the elimination diet. We saw Lu's GI this past Tuesday when we were finally able to snag an appointment someone else cancelled and went over all the EE options in greater detail. And as we talked it over with her, it all seemed much more manageable than I orignally thought. And in a way Lu's been making it seem easier this week by refusing toast and milk on her own. It does seem like they bother her when she eats them. I'm worried about her losing weight and slipping backwards right now, but if she doesn't even want to eat the things she's not supposed to eat, what else can we do but move forward with this?

And so, forward we go. Things can only get better.

Myffy's Intervention

2011-01-23T14:14:00.000-08:00

I realize once again that Myffy has been under-represented in this blog. And that's mainly been because I've been mostly blogging about Autism (and more recently EE) here lately. Which makes sense since it consumes my thoughts most of my waking hours. But, well...

The thing is...

There's just no good way to say this, so I'm going to say it as plainly as I can. Over the course of the past couple of weeks Myffy has begun to show early signs of regressive Autism. These are the little things that we kind of noticed with Lu and allowed our pediatrician, ourselves and well meaning friends to assure us were normal and probably just a stage. Nothing really to worry about. All kids are different. Kids develop at their own pace. Etc. etc. Little things like refusing to make eye contact. Refusing to use words we know she can say. Screaming over tiny things that don't quite go her way, things that wouldn't have fazed her less than a month ago. Becoming inconsolable, refusing physical contact, refusing food, refusing nursing. We were hoping this was all down to her being sick. And she was really sick. We both passed one hell of a stomach flu back and forth between us a couple of times. But we're both over it now. And even accounting for that, we just can't ignore these signs. Not with knowing all we now know about the incredible differences early intervention can make. And the earlier, the better.

So do we actually 100% know that Myffy has Autism? No. Are we going to start her on an intervention program anyway? Yes! It can't hurt her. If anything it will just help to make sure that she acquires an age appropriate skill set in a timely fashion. If she is actually at the very start of regressing, hopefully this will stop the backwards slide and get her moving forward again immediately. And since having an Autistic sibling gives her a 1 in 5 chance of actually having it (as oppose to the 1 in 110 chance that every other kid born right now has) I think we'd be crazy not to be proactive here.

I'll admit that half of me crumpled over this. Especially so soon after Lu's EE diagnosis. Poor kids. Poor me. Poor Stew. Can we really handle one more thing thrown on the pile right now? But then we talked, and the truth is, who else is better able to handle this than we are right now? I mean our physical, emotional and financial reserves are all low from going through this with Lu for the last year, but we've learned so much. We have a trained team of therapists and habilitation workers who are already working with Lu. And as of today Kris (aka Dr. G) has already started cycling Myffy through Lu's early procedures and will tailor them to Myffy. And coincidentally Lu just grew out of the tiny Montessori table and chair Mom had gotten her ages ago and we bought a new one a few weeks ago, so today we moved the tiny table out of Lu's therapy room, replaced it with the new table, and put the old table in the dining room where Myffy worked with Kris while Jes and Kayla worked with Lu. It's going to be hard. It's going to be a lot of work. But we're all set up and ready to go.