Looks like it's been a year since I started writing this blog. I've been wondering if I should continue or I should call it quits, slamming down the top of my MacBook in dramatic fashion. Oh, what? What's that? No, I shouldn't stop writing because you absolutely love reading it?? Wow, I'm so flattered. Oh, well... ok. I'll stick around a little bit longer.
A lot of things have changed in the last year, a lot of things have stayed the same. My highest high of the year was my trip to Israel. No doubt. My lowest lows were definitely losing Cassidy and Sugar Magnolia.
Thanks for coming along with me on this journey. Please keep reading. Keep adding comments. I love reading them and hearing your feedback. Follow me. Seriously. On the left side of the page is a section of "followers". Click on follow me. Do it!
You may have noticed that I've stopped using my Little Bird's proper, given name here. Instead, she is known only as Little Bird, LB, my bird. If you've ever spent any time with us, you know that this is what I call her anyway. Ever since I was born, my own mommy has called me birdie. It's just another name I go by. So, it's only natural that I've always called my girl Little Bird. I even went back and made some updates to past postings, removing her name and replacing it with said moniker. Call it her nom de blog. Whatev. Also, I'm not committing to adding lyrics to every post anymore. It was super fun, though, right?! I'll still do it. Just not every post. Ok?
Thanks for your support. I am grateful. For realsies. I love you. No, really, I do. Happy Anniversary.
So, I like to read a lot. It's a pretty good escape. Plus, TV kinda sucks. I've had a list of what I've been reading on the left side of the blog, but I'm done with that. I'm moving on. Now you can click on the link on the left that says "wanna see what I've been reading?" Go ahead. Look at the left side of the page. I'll wait here. Did you find it? Ok, so that will take you right to this site. OR you can just type www.shelfari.com/DGGOTB into your browser. Visit it, look around a little, keep checking back to see what I've been reading. Enjoy!
"It's been a long December and there's reason to believe maybe this year will be better than the last"
Alright, so there's reason to believe that maybe this year will be better than the last. There's reason to believe that maybe this year will be better than the last. There's reason to believe that maybe this year will be better than the last. Think if I say it enough, I'll believe it? Well my friend DM has promised to help me be more positive in the new year. I'm not really one for resolutions. But, I definitely think it would behoove me to have a better attitude. Think happy thoughts. Think happy thoughts. Isn't that how Peter Pan and his little Tinkerbell flew to neverneverland? Well, that and pixie dust. Anyone got any pixie dust??
I just feel better when I have a better attitude. I know that. It's just tough to have a great attitude sometimes when I'm in the muck and the mud of ASD. Work in progress.
Little Bird has pooped twice a day for the past 12 days. She's been pretty "on" for that time period. Chatty, fun, funny. I think it's the flagyl. I'm just hoping this trend continues. I'm wondering of a round of diflucan is next. We'll see. Our next visit to the voodoo doctor is in a week.
As always, it's been nice to see some of my friends and eat at my favorite spots here in LA. We will make our way "home" to the snow tomorrow!
Another holiday season, another struggle. We are 2000 miles from home. I knew a couple months ago that it would not be good to take my kid out of her element; out of the routine; away from her therapies, etc. Although, I have seriously been doubting whether the therapies are helping lately. Well, by lately, I mean for the past 9 months. Something has been different since April. We've seen a major slowing of progress and even a movement in the wrong direction. It happens. I just wasn't prepared for it to happen to us, or this early in the game. Of course, Little Bird is only 4 (who am I kidding, she's almost 5), and technically has a lot of time to improve, but everyone who works with her has been pretty surprised at the slowing of progress. I'm trying to stay positive, but any parent going through this will tell you, that can be very tough. Very tough. But, I digress.
In effort to smile about something (no easy feat on a day like today), I typed this up about 10 minutes ago as I tried to catch my breath after another very frustrating potty training episode with my child. Oh, and yes, we're Jews, but still...
On the 12th day of Christmas, Autism gave to me:
11 Docs a-billing
10 scripty phrases
9 gluten free recipes
8 different therapies
7 blank stares
6 things she'll eat
5 spins in a row
4 friends left
2 arms a-flapping
And 1 kid with A-S-D!!
Gotta laugh a little, right, fellow warrior moms? If I don't laugh I think I'll lose it a little. Ok, a little more. Because trust me, I've fucking lost it.
Merry Christmas, if you celebrate it! We might be Jews, but we are an equal opportunity gift-giving/receiving family, so we opened up presents under a plastic tree this morning and we will be eating brisket and latkes tonight. Plus, we weren't together for Hanukkah this year.
She was pretty cute opening gifts, so here are a couple pics:
Mickey Mouse Clubhouse Guitar and Book
SuperWhy Why-writer "Super Readers: to the rescue!"
Wait, don't ALL almost-5 year olds get iPods for HanukkMas?
What an amazing difference a day or so makes. I think the flagyl is working. Little Bird started pooping her brains out two days ago and the hits just keep on comin'! With every poop she is more verbal, more animated, more connected. Here she is lighting the menorah for Hanukkah and saying the prayer... in Hebrew!!
"Heaving on the boulder, just trying to move it an inch
I think I'm getting closer, I think I'm getting bolder
But then it starts to slip
And I keep making the same old faces again"
-Monsters of Folk
Here's another one of those in the trenches of Autism posts. This one has a lot of poop talk. We are on day 11 of Flagyl therapy. Yes, I expected things to get worse before they got better, but I did not expect it to get this much worse. I have been a completely miserable person for about oh, four and a half years. Kidding. Kind of. Actually, I've been a wreck for the past week. It's horrible to see your kid take giant steps- no leaps- backward when you're busting your fucking balls to help her make progress.
Anyway, basically the flagyl is meant to kill off bacteria in the gut. In doing so, it often arouses said bacterium and almost activates them. The key is to get them the hell out of the system. However, my kid so completely chronically constipated, so all those toxins are just sitting in her!!! She pooped on Monday, but hadn't again until last night (Thursday). She'd gotten to the point where she was not talking much, just scripting; spin spin, flap flap; tantrums. Last night she pooped twice, then this morning had some pretty massive diarrhea. By the way, if this talk makes you squeamish, you'd never last a day as a mommy of a kid with Autism. As soon as all that shit (literal) was out of her she was chatty, smiley, happy. It is absolutely impossible to deny the gut-mind connection when you see results like this. I'm going to pray like a madwoman that when I pick her up today I get a good report. I'm going to pray that her speech and play therapy sessions go well this afternoon.
I know that she does better when she poops and Little Bird's awesome pediatrician (shout out!) suggested we take her to a gastroenterologist who can help (hopefully) to get her pooping regularly. I called and got the earliest appointment... at the end of March!! That's 4 months away! Crazy, right? Ridic. I doubt the GI doc will be able to treat her the way she needs to be treated, since we really need to heal her gut as opposed to just running tests and then shrugging shoulders and passing us off to the next specialist in Western medicine. But, I'll give it a try. I mean, I've tried everything else, right?!
I'm preparing to travel for a while and I'm very concerned about how things will go with her while we are gone. There is no such thing as a vacation with her. It's often a lot more work than usual and don't get me started on what happens when we're off our schedule, away from structure and therapies. Thankfully we will be with family who love her and often times bring out the best in her.
This video is a snippet of a tantrum a few days ago. No clue what set it off, but it lasted about an hour or so. Notice the little wiggle - that's yeast! She has a little yeast rash on her tushie. Yeast in the gut doesn't just stay in the gut!!
Five. It's coming. Five is a very big number for moms like me. First of all, we think we will be done with all this special needs stuff by five: the therapy, the worry, the "special" stuff. I think the average age to start this journey is about 2 and we're often told that if we bust our asses now and cram early intervention down the throats of our kids, then by five years old (school age), they'll be "done". Of course, I started this with Little Bird when she was 6 months old, so I've basically been doing it her whole life so far. Will I have to do it for the rest of her life, too? I get so jealous of people who only worry about where their kids will go to school or who to invite to their birthday parties; It's not that I don't think they feel like those are big problems, but they'll pass. I'm here worrying if this is forever. And it just might be.Five. It's when kids start school. It's the age that all the kids she was a baby with will start school. She will not. She's just not ready. I worry that if I put her in the public school system now, they'll stick her in a special needs class and I wonder how hard it is to escape once you're "in the system." I can't imagine it's very easy to blend in socially once you're in that system, either. She'll have to be six when she starts Kindergarten, if she's ready then. Five. The best outcome for kids with ASD is reserved for those who have developed language by five. Five. Last January when Little Bird turned four, a fellow warrior mom told me "you're gonna LOVE four!" Her kid made loads of progress from four to five. My bird's got a month left to make me love four. So far... meh. No joke, just thinking about five makes me sick to my stomach. It's universal among moms like me- we all feel it and we all get it. I can tell another warrior mom that I'm feeling upset, depressed because my girl's about to turn five and she'll totally get it. Totally get it.Five. Little Bird will be five in 40 days. But who's counting?
Per my friend, MD's request I have made a list of the top ten books I've read this year. Throughout the year I post a list of ALL the books I'm reading. See, it's over there to the left. Yeah, I read a lot. Here are my faves (in no particular order):
The Girl with the Dragon Tattoo - Larsson
Loving Frank - Horson
An Inconvenient Wife - Chance
The Help - Stockett
Exodus - Uris
The Chosen - Potock
Once Upon A Day - Tucker
The Weight of Silence - Gudenkauf
19th Wife - Ebershoff
Annie's Ghosts - Luxemberg
I'm actually reading Annie's Ghosts right now. It's so great. When I'm not reading it, I want to be reading it. That reminds me.... I gotta go!
"I don't care who's wrong or right, I don't really wanna fight no more"
Since I'm on this roll of being "in the trenches of Autism"... A few days ago, Greg's mom (also known as Little Bird's Noni) told me about an article in the LA Times: "Autism: kids put at risk". Have a read. Here's the exact email I sent to her in response:
Just read it. It's so true that this is ALL experimentation. The chelation (pronounced key-lation) that is mentioned is meant to clean out the body of heavy metals. A lot of parents who watched their totally typical kids change overnight after vaccines feel that the chelation will get the toxins out of their kids. Sounds so scary to me. But, then again, that's NOT our Little Bird. So, I'm not there. Having said that, doing half of the stuff we are doing once seemed crazy to me, too!
Amazing statistic that 75% of parents of kids with Autism have tried alternative therapies. It's because we're all DESPERATE! Plus, Little Bird's regular pediatricians** just throw up their arms and say they don't know what to do. Well, that's really easy when you're not living this nightmare and won't be stuck with it for the rest of their lives! So, of course, we're all trying everything out there. Still, everything we do is an experiment and its scary because we have no idea what's gonna happen. Can you imagine what was first thought when someone came out and said "let's put huge amounts of toxic chemicals and poisons into the bodies of cancer sufferers- we'll call it chemotherapy!"
Our family is on the front lines! We are in the trenches!!It makes me crazy that there are people fighting back and forth over who is right here; which protocol to follow, etc. Not everything works for every kid!! **Shout out to the bird's pediatrician whom I adore! It's not the fault of general peds that they don't know what to do with kids like mine- they're used to looking in kids' ears and throats and they're good at that. I have a special kid and I need to see specialists for anything beyond the ears and throat. Still, I love my pediatrician for the basics (can you tell she reads this blog sometimes?!!!)
We recently began walking down a new path and we've kicked up our biomedical experiments (I mean, they really ARE experiments) with Little Bird. I used to think that the biomedical movement was completely crazy and only for the really desperate families. And then I became desperate.
So, a few weeks ago we added the Methyl B12 shots. I was so excited because I've heard so many stories about fabulous success with them. So, that wasn't our story, but I'm not giving up on it just yet. Many people take B12 for energy and to boost the immune system. Well, my bird got a little too much energy! She became so hyperactive and even started spinning in circles- something we haven't seen in months and months. So, we're putting the Methyl B12 on hold right now. A few weeks ago I did my best impression of a scientist in a lab and put Little Bird's pee and poop into test tubes and shipped them off to a few different labs all over the world. (Side note: when I sent Greg a pic of all this, his only response was "is that our kitchen counter?!")
Well, the results are in and while it's WAY too scientific to discuss here, I will tell you that the most remarkable thing that came back was the outrageously high level of DHPPA. You may be asking yourself, "what the heck is DHPPA?" And so, my friends and dear readers, I give youthis link. You can go ahead and read all about it. FUN! Later today we will begin around of Flagyl (an antibiotic) designed to combat the bacteria in Little Bird's little gut. We've spent the last week giving her a very potent probiotic called Ther-biotic Completewith 100+billion cultures. That's pretty intense! It's purpose is to create a healthier environment in her gut, especially as we are about to send in this antibiotic which will wipe out all kinds of bacterium (good and bad).
The Flagyl has been known to produce aperiod of yeast die-off wherein symptoms can increase and worsen for a while. Basically, it can get a lot worse before it gets better. Not looking forward to that part. But a few of my friends who have gone through this swear by Flagyl and the results. I'm just hoping my little bird will feel better and get better really soon!!
I'm extremely nervous about the die-off period. I'm worried just like I am every time we start something new. the thing is, kids with Autism are like snowflakes: no two are alike. That means that what works for one will not necessarily work for another. That's why this is all an experiment and I am on the front lines, in the trenches of Autism.
That's a quote from a little known quartet out of Liverpool. I don't think they'll make it.
So, moms, what are you giving your kids' teachers for the holidays? And warrior moms, what are you giving your kids' therapists for the holidays?? I always make a donation in their honor to Friendship Circle and then give them a card letting them know, along with some little trinket or something. I've made things in the past or gotten certificates for manicures with a cute little note saying "take care of your hands, I'm placing my kid in them!" But I'm not sure what to do this year. I need some ideas.
There's a reason that they call jealousy/envy a green-eyed monster. It is a fucking monster. And it eats me alive- when I let it.
I know that my not-normal kid needs to be exposed to typical kids, but why, oh why do I continue to torture myself with playdates with said typical kids? I'm not sure the benefit outweighs the pain, frustration, fears, and reminders. I took Little Bird to play with a kid we've known since the girls were infants (they're about a month apart) and it's just a hard, painful reminder that my kid can't do things that the others can do. The simplest things. The basic life skills things: dress herself (this other girl played dress up and threw her clothes on and off so easily!), go to the bathroom herself, get her own snack- she even grabbed scissors out of a drawer and opened a pack of snacks! Don't get me started on the fact that my kid stayed silent the entire hour and a half we were there- though I think she did shriek with excitement as she spun herself around and around. More fodder for my fears of this kid living with me forever, never being able to do most of the things that these other kid can do without even blinking. I hate you, envy. I do.
Sigh. I had a rough night as I brought home a very whiney, out of it kid. This is tough work to do alone, yet that's what I'm facing. The call this morning that the play tutor is still sick and cancelled did not help. I had to cancel breakfast with a girlfriend, which would have been the only thing I'd have done for myself today because I knew I wouldn't have my shit together. When I flaked on my friend, JG, and tried to explain why, she sent me a text: you are one of the strongest people I know. Hmmmm, not feeling so strong right now.
By the way, the reason I post such a pathetic, depressing post is because this is what it's really like sometimes. This is what it is to parent a kid with special needs in the real world. Most people have NO clue, and I can't blame them because how would they ever know? But if someone hears my story, then maybe she'll be a little more compassionate toward the next mom that comes along. Because this life can be kinda lonely and the world of a mommy to a kid like mine gets smaller and smaller and smaller.
Sometimes when people ask me "what do you do?" I usually answer, "I stay at home with my daughter." But, on more than one occasion I've actually found myself answering "Oh, I'm just a mom." And then I giggle to myself, because I'm not the kind of mom who has time to meet for coffee with the girls, get mani/pedis, shop, etc. I am a different kind of mom.
Sometimes I think the reason I'll tell them "just a mom" is to answer and then move on- because I couldn't possibly answer that question honestly without yielding jaw-dropping results. Although, I did tell you a little bit about A DAY IN THE LIFE once before. But that wasn't really a typical day.
A lot of people wonder what types of interventions we implement to help Little Bird make progress with regards to her PDD-NOS (pervasive developmental disorder- not otherwise specified) which is an ASD (autism spectrum disorder). It's a lot to explain and I'm certain I'll leave something out, but this is pretty much how it goes....
We get up each morning and I mix her morning cocktail of watered-down apple juice laced with a mixture of creatine, acetyl-L carnitine, and vitamin D. We make her a breakfast that is Gluten Free and Casein Free: usually special pancakes and a touch of maple syrup (she ends up smelling sweet for the whole morning!); sometimes oatmeal with ground flax seed mixed in.
We hurry off to school. This year, she is in a great inclusion program which means that she's in a classroom with typical children. She is the one kid in the class with special needs and she has an amazing shadow/advocate/paraprofessional working with her.
I pick her up at 12 and we literally rush home for lunch. It's very difficult to eat out with a kid on a special diet. Lunch is usually shoved down her throat because there's not much time. The lunch menu usually changes, but often includes a soy-based yogurt (I know, I know... soy is NOT great, but I can't find anything else that she'll eat with the same consistency and the strawberry taste). It's gotta be strawberry yogurt because I mix in a strawberry flavored DHA/fish oil supplement. I also hide a probiotic in her applesauce. Next we run to an hour of Occupational Therapy (OT) OR two hours of PLAY therapy - depending on the day. If it's a Tues or a Thurs, we do OT and then we have about an hour between the end of OT and the beginning of another hour of Speech Therapy; although I just added an additional half hour of another speech therapy that's kind of Applied Verbal Behavior (AVB) based. She sees yet a third speech therapist in combination with an amazing psychologist in town on another day. You'd think she would be exhausted, but she still does jazz/tap dancing one day a week in the evenings at Friendship Circle!!
Dinner is always pretty busy. I make 2 dinners: one for us and one for her. I usually serve her dinner with a cup of "lemonade", which is a magnesium supplement called Natural Calm.
She gets one more round of the creatine and carnitine before bed. It's a lot, right? I probably forgot something. Oh yeah, every third day I give her an injection of Methyl B12.
So, what do I do? Well, "curing" Autism is my full time job. I have the word curing in quotation marks because I know her ASD will never really be cured, but I do think that all the interventions we have in place will surely continue to make a difference. My kid is nothing like she was a year ago. That's actually one of my favorite things about keeping these notes, this blog; I get to look back at old posts and put things into perspective a bit. After all, everyone needs a little perspective, no?