Archive for July, 2011

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: 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.