Bearizona and BFFs

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

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!

 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

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!

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

 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

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.