A sassy, crafty mama bird from Los Angeles raising a very sweet little girl with Autism and a new baby boy in the Midwest... and other stuff, too.

Friday, July 30, 2010

*This Moment*

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama

Wednesday, July 28, 2010

Poop- or lack thereof

Yes, I'm gonna talk about poop again. And probably again after that, too. Poop is such a huge part of Little Bird's Autism. Actually, it's the lack of poop: chronic constipation. I've talked about this so many times, I can't even think about going back and giving you links to read old posts. Just trust me.

Constipation and/or diarrhea is considered a co-morbid condition of Autism. My bird seems to have been born constipated. The first time we ever consulted a doc about it was at 12 weeks old. We were visiting family and friends in L.A. and she wasn't pooping. The next time this became an issue was at 7 months old. We were on Mackinac Island in Northern Michigan. It hasn't gone away since. Here are the things we've tried over and over since then:
Karo syrup, mineral oil, prunes, glycerin suppositories, probiotics, prebiotics, healthy yeasts, miralax (stool softener), metamucil, benefiber, enemas. I could go on.

When she was 3 1/2 we took her off all dairy. Within a week, she came running up to me declaring, "I pooped!" What?! I didn't hear screaming, crying, etc. We were on to something. About a month later, we took her off gluten. For about 9 months, she was pooping every other day without screaming in pain. She was doing really well during this time. Then it became every 2 days, then we recognized that we needed to do something else. That was around the time of her first round of flagyl. We were shocked by the volume of poop that followed. Where was all this coming from? How could she possibly fit all this poop in her tiny little body? I'm talking 4 times a day of poops so big, I wasn't sure they'd flush. After that first round of flagyl (last december- you can look back in the archives for your reading pleasure), we noticed that she pooped with a lot more ease. Did the flagyl help heal her gut enough for her to poop better? Who knows, but every time she's on it, she definitely gets cleaned out and then does so well for a few weeks. She's had 3 rounds in the last 9 months. I'm slow to put her on it again so soon. There are some side effects/hazards I worry about. Plus, the worst thing would be for the bacteria in her gut to grow resistant to the powerful antibiotic.

I've had thoughts like, "well, it's all gonna come out sooner or later, so I'll just wait." But the truth is that after 3 days of not pooping, she becomes withdrawn, overly hyper and extremely sensory seeking. She might flap more, spin, bang her head on things. She becomes more scripty than usual and can't focus enough to slow her brain down. She can't even finish one script before she begins another. Sometimes she stops talking altogether. It's so sad. Its so terrible to see your child go through this. As soon as she does poop, she's back: calmer, attending to tasks better, and more "present". There's definitely something to this.

Last December I decided to see the "best" pediatric GI doc in town. It took me 4 months to get in. When we saw him in March, he admitted that he had no idea why this was happening and even seemed unconcerned. All that really bothered him was how skinny she is. He suggested we add gluten back into her diet in effort to increase the foods she'll eat and pack on some pounds. She's 44 inches and 33 pounds (although that might be 2 pounds of poop in here- for reals!). We tried to add the gluten, remember? Didn't work. So, at the follow up appointment which was last week, I once again aired my frustrations and determination to get to the bottom of the constipation. His suggestion: metamucil, miralax, senna laxative (which we hadn't ever tried). He palpated her abdomen and said that he couldn't feel any poop in there. I suggested that could be because 36 hours earlier I'd given her a liquid glycerin suppository and she'd gotten some poop out. I also said, "trust me, it's in there. Because how can she poop such massive amounts when on the flagyl and so little otherwise? Where is all the poop?" In effort to appease me, he ordered an abdominal x-ray. His nurse called the next day: they found a mass of stool. Yeah, no shit! Well, actually... a lot of it. Their suggestion: senna laxatives, metamucil, etc. Well, here we are. I gave her 2 doses of the senna and 3 doses of metamucil in the 18 hours and NOTHING happened.  This is not a normal, healthy child we're talking about. She's not going to tell me her tummy hurts from all these interventions: she's going to scream, cry, tantrum, bang her head and possibly hurt herself. I might not be able to leave the house with her. She's also not going to say, "mommy, I think I have to poop now so I'll just go into the bathroom." No, she's going to go where ever she is. So, I will have to keep a diaper on her if I start to see the signs. Autism sucks. Leaky gut sucks.

This is a battle I fight. The doctors don't take me seriously. Finally they see what I've been telling them: there's poop in there and it doesn't come out on its own; her behavior changes when she doesn't go. But then they kind of throw up their arms and say they don't know what to tell me. Then they say to come back in three months for a check up. I spoke with Little Bird's pediatrician a few days ago and told her they found this mass. She said, "good for you for following your mommy intuition. Now go blog about it!" So, that's what I'm doing while I wait for the laxatives to take effect.

my basket from CVS (the cameras are for Lena to take pics of the bird at camp)

Sunday, July 25, 2010

For Lori

My heart is heavy. I've lost a friend. A really great, beautiful, amazing, non-judgmental, open, honest friend.


I've told you about Lori before, and her efforts to raise awareness and funds to fight cancer. But what I will remember her for is her kindness and her unabashed acceptance for anything that deviated from the norm. She was always the first to tell me that she didn't care if my kid was having a rough time or was  "off," she'd insist that we come over and play anyway. She was the only person who volunteered to take the bird for a few hours while we said goodbye to Sugar Magnolia. She probably got that generosity from her parents. One year while walking the track with her parents at the Relay For Life, they learned that we have no family here. They immediately insisted that we spend holidays at their house. And we did.


Lori passed away yesterday after fighting for a long 5 1/2 years with cancer. It was discovered just 6 weeks after delivering her gorgeous, smart and funny little boy. Can you imagine? You've just had your first baby with the most spectacular guy- you're over the moon- and then... this. Never would I ever say that Lori lost her fight. She kicked the shit out of that cancer. We're talking stage four ovarian cancer. She'd knock it down again and again every time it reared it's ugly head. She endured all kinds of therapies, clinical trials, etc. She was so brave and such an inspiration. Truly walking through this whole long illness with grace and dignity. The last six months had been rough. She lost her dad to the same disease. She was in pain. She wasn't happy. But she was still funny. I'm forever keeping our text messages to prove that!


Yesterday I noticed that a few people visited those old posts on this blog (yes, I can see that). So, I did, too. I looked back at others, as well. Others that Lori had commented on. Just reading her words made me sad. I'm so sad for me and for all the people who were lucky enough to call her a friend. This is a tremendous loss for us, but the universe is better off for ever having had her in it. The stars are very lucky tonight, because I know she's up there shining among them.


Thank you, Lori for letting me into your life; for being a friend that I could always count on; and, well, for just being you.


**Hey, if anyone is near 26th and San Vicente in Santa Monica, please grab a drink from Zen Zoo tea and tip a little bit out for my homie. It was one of her favorite places!!


Here's a link to Lori's blog. You can read her own words and you'll recognize right away just how special she was.





It is suggested that those who wish to further honor the memory of Lori Haber Buckfire may do so by making a contribution to:
Karmanos Cancer Institute
Gail Purtan Ovarian Cancer Research Fund
4100 John R.
Detroit, MI 48201
800-KARMANOS
http://www.karmanos.org

Friday, July 23, 2010

*This Moment*

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama



Thursday, July 22, 2010

Random Thought Thursday

- I never played kids' music for the bird because I just can't stand it. So, she listens to the music we listen to. However, she has definitely developed her own taste. In fact, there are plenty of times when we're listening to the radio and she tells me, "put some music." Since it's already on, I ask, "you want me to put on different music?" "yeah!" Unfortunately, sometimes she tells me to change the station when it's a really good song. She seems to be going through a hip-hop/rap phase right now. She really likes the strong beats- obviously a sensory seeking thing.

-The second session of camp started this week. I agreed to let the bird ride the bus on the way home. She loves it! I, of course, was armed with my camera for the very moment the bus pulled up. When the driver opened the doors and asked "which kid is yours" I said, "the cute one." Obv. Note the finger in the ear which has now become constant.


-Word association: this weekend while the iPod was on shuffle, we landed on the song Bloodsuckers by David Garza. Little Bird was listening and then shouts, "suckers! I want lollipops!"

-I had what seemed like a Midwestern Moment this week... All set and ready to walk out the door to drop off the bird at camp. Garage door fail. Stuck inside. I run back inside, call my neighbor/friend Jen as she's pulling out of her own driveway to drop her daughter at camp (different camp). She swings by and grabs me and the bird and drops her at camp. Later in the morning, Greg came home to help me get my car out the garage. He asked the teenage neighbor kid to help him get the garage open manually. The kid was already here mowing my lawn. Yes, friends out in LA, a teenaged neighbor cuts my grass. So cute, right?!

-Many kids with Autism don't play with toys appropriately. My kid tends to chew on toys and/or mouth them. I found this....
Her whole lower arm has been gnawed, the other hand looks chewed on, and her nose looks bitten (to spite her face?) That oughta wipe that smug smile right off her face.

Sunday, July 18, 2010

ad·vo·ca·cy

"I want a girl...
who uses a machete to cut through red tape"
-Cake


A few months ago, a mom I know was starting to freak out about what to do with her son for school next year. She'd been given the run around by the public schools, and most private schools won't take kids like ours; they seem to define special needs as dyslexia or some learning disabilities. I have about 9 months before I really need to freak out about this. Still, it's there. Anyway, I ran into this mom today and we talked all about how important inclusion is, how much Little Bird has benefitted from it, and how much her son is loving being at an inclusion summer camp. We talked about the big A. Well, the other big A: Advocacy.

A new friend found her way to these parts recently and sent me a message that I'm an "amazing advocate" for Little Bird. Such kind words, but really, I think most moms in my situation would fight the same way. My friend Lynn says she's an unwilling inductee into the Autism Army. Love that. Because we are warriors in battle. We are an army of moms fighting like mad for our kids. 

And we're everywhere. Hear us roar!
Two years ago my friend W's son entered a full inclusion preschool program and then she never stopped talking about how amazing it was, how her son progressed leaps and bounds just by being around typical kids. The next year, I wiggled my way into that program. I was uncertain, but wanted so badly to have the same experience W did. It took no time for me to sing the praises of the program. In fact, the director of the program told me to slow it down because she was getting too many calls and didn't have enough spaces. I can't help it! I love this program! Of course, Little Bird will do Kindergarten there, but that's the end of the line for her- the program ends at Kindergarten. We'll have to see where we can find a good fit for her. I'm willing to fight fight fight for inclusion and for whatever services my bird needs and deserves. Grrrrrr!

Not all moms are as tough, but that's kind of what we're here for. We are tough for those that can't be. We are fighting for inclusion so the schools, teachers, social workers can see just how amazing it can be. They'll see that every child benefits from an inclusive environment, and they'll be more ready and willing to join our fight. Of course, Little Bird is my number one. But there's a part of me that knows I'm doing this for YOUR kids, too. I'm doing this for the families whose kids haven't yet been dx'd- even for those who haven't yet been born. Because we tough cookies, we mother warriors are gonna get this done. Grrrrr!

A few days ago I sat with a woman watching our children get occupational therapy. She's from Pakistan and her son is about 4. She's so intimidated by the system because English is her second language and she doesn't seem to know all of her or her son's rights. She accepts whatever is offered to her the first time around. I say the first time because most of us warrior moms rarely sign an IEP on the first round. We bring it back to our private therapists and we consult other moms who have gone before us. Some of us seek legal help. These might not be the very best services she can get for her son, but she doesn't even know that she can ask for more. She is, I believe, being taken advantage of. She might even know it. And so, it's for her, too, that I fight; that we all fight. We're changing the world, the way the system deals with kids with special needs. One IEP at a time.

Grrrrr!


Friday, July 16, 2010

*This Moment*

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama

Thursday, July 15, 2010

Random Thought Thursday

- Nice. It all makes sense to me now.







- A few weeks ago I mentioned that I wanted to learn to play the banjo. I have changed my mind and want to buy myself a shiny new tambourine. Way more my speed.



- We were at Target (I'm working on becoming mayor on foursquare) and I asked Little Bird which shirt she wanted. She said Mickey. Devastating, I know. Oh well, she can pick her shirts when she pays for them herself. Grateful Dead it is!

- Do you read Katy's Bird on the Street blog? She's amazing. Of course, I think all moms dealing with a little something extra are amazing, but Katy really rocks. I woke up this morning and read this post. I'm so moved by it because it's something so many of us can relate to; not only the post, but the comments, too. Click on the link and have at it. Charlie's Ghost.

Monday, July 12, 2010

sick and tired of being sick and tired

Oh, hi there. Hey, I noticed that I haven't been posting as much as usual lately. I think it's because things have been going really well. Little Bird is definitely on an upswing. I'd say we've had a good 2 weeks. In a row. Impressive for our history. A lot of it has to do with her gut. Cleaning it up and cleaning it out. We added metamucil a few weeks ago and it's helping to avoid constipation and thus toxins in her gut from leaking out into other places they don't belong. I know, I know, it's so hard to buy in to. I am such a natural born skeptic, but it's just impossible to deny that Little Bird is such a "gut" kid when as soon as we treat her gut, we see amazing changes and results.

Anyway, things have gone well.

I've been happier, funnier (right?), more energetic, just feeling better. I've been working out more, smiling and laughing more. The music I've been listening to lately has changed a lot, too. More happy, upbeat; less sad boy with a guitar. So, it was a complete shock on Saturday when I started feeling exhausted and sooooo weak. Could have been a little bug. I toughed it out so I could make it on to the boat for fireworks on the lake Saturday night. Fun night. I felt a bit better. Slept 9 hours that night but woke up exhausted. Listless. After talking it over with a friend (always a bonus when one of your very best friends is a nurse), it occurred to me that I could be dehydrated. In my friend Lisa's words, "it's been Africa hot lately" and sooooo humid. I've been working out more, sweating more, and probably not drinking enough water. Coffee, yes. Water, no. I felt a bit better yesterday after loading up on fluids and trying to rest. I say trying because neither my husband nor my daughter let me rest very much.

Last night I was exhausted. Fell asleep at 10:30. Wide awake at 11:30. It took my brain about 10 seconds to go from "oh, didn't I just fall asleep?" to "omgomgomgomg". I could feel the cortisol pumping through my veins. So anxious. Not even sure what the anxiety is about. That's what is so strange about anxiety... sometimes there's no clear reason for it. It just creeps up on me. I made my way to full blown panic, but the Xanax kicked in before I got there. Still can't quite figure out what it's about. Might be the concern over feeling so weak all weekend. Might be because I worry about the bird. Might be because I'm too overwhelmed by all the tasks I take on. Might also be because I feel like I'm so busy taking care of everyone else and no one is taking care of me. Might be hormonal or chemical. Who knows? All I do know is that I hate feeling anxious. I hate not being able to make it go away. I hate feeling tired after a night of not sleeping well, up with worry and too much stress. I do know that if you deal with too much stress and just keep on going, it bites back sooner or later.

I'm sick. And tired. And sick and tired.

What? What's that you say? I should lay low and get a good night's rest? Yeah right! I have a meeting for yet another charity/program I work with.

Friday, July 9, 2010

*This Moment*

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama

Thursday, July 8, 2010

Random Thought Thursday

- This is my favorite post of the week. Heather wrote it. She's mom to two little boys and one of them has ASD. She talks about grief and how parents like us don't really go through the typical stages of grief, but more of a "constant sorrow".

-I feel so inadequate when I go to the pool at the JCC. But only because all the old men have bigger boobs than I do.

-This is a picture of my coffee table and the snotty tissue that my husband left on said coffee table. For two days. I refuse to throw it away because it's HIS tissue and I want HIM to throw it away. I am SO not backing down. I snapped this pic after the second day it lay on the table and sent it to him with a "still here? really?" message. These are the "issues" we have in our marriage. Jealous? Oh, and doesn't everybody have the Barack children's book on their coffee table?

-Fourth of July... Happy Birthday USA. 234? Well done, America. You don't look a day over 220.


- Oh, and one more thing... We've been having a heat wave 'round these parts, so I've spent a whole lotta time at the beach and the pool. Greg snapped a shot of me and I was reminded that I've still got it! (wonder why I don't look very happy about it here)


Tuesday, July 6, 2010

Faith through a tissue box

Every so often I am taken over by fear. My fear is so often False Evidence Appearing Real. It's not based on anything happening right now, rather it's anticipatory anxiety and fear; what if what if WHAT IF???


The last regression Little Bird went through was intense and left me feeling even less safe and secure with regard to her future. I'd been getting really worked up. Like-waking-up-in-a-cold-sweat kind of worked up. I know my thoughts are irrational and that they're based on feelings, not facts. So, I rely on those who have facts and experience to give me their take. And then I try to believe them. Sometimes I even hold on to the positive things they say. Sometimes I need to. But my fear makes me forget them.

So, I wrote down some of the positive thoughts Little Bird's therapists, doctors, and teachers have shared with me. I wrote them down on small pieces of paper, and then folded them up, dropping them into an empty tissue box. When I need to, I can reach in and grab an affirmation, a reminder of reality to push away the false fears that paralyze me. I need these notes, these reminders of what's real as opposed to my fears. I need the encouragement to keep going, keep fighting, have faith. I'm not a negative person, I'm just full of fear. In fact, I think this is actually an extremely positive little project. See, I trust these people. They have experience that I don't have, plus they're not emotionally attached. I am. They can see things more clearly. I can't.

Look, I'm not holding on to false hope that this will go away, but I do want this to get better. Because right now it's hard. Like, really hard. And I do have faith, but sometimes I need just a little more. Now all I need to do is reach into my little tissue box to get that boost.

I know a guy who says that issues are like tissues: once you pull one out, another pops right up. Well, I'm hoping that will be the case with my little tissue box :)



Think I'm a Top Mommy? Click on this picture to prove it.

Friday, July 2, 2010

*This Moment*

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama


Thursday, July 1, 2010

Random Thought Thursday

-
- Here's my basket from the drug store a few days ago. Who wants to party with me???


- We leave critter food outside on our deck because we love seeing the little guys out there. I've seen groundhogs, chipmunks, colorful birds and even deer in my back yard. It's like the nature channel some days. Just another reminder that we're not in Los Angeles anymore...













-Reason #4080 I carry a camera with me at all times. You never know what you're gonna see lying across a cab in a parking lot.


- Somewhere there's a 16 year old girl getting a brand new BMW for her birthday and all her friends are jealously thinking, "I wish my dad could do something amazing like manufacture taco scented scratch and sniff stickers."

- And finally... kudos to my husband for making the smart decision to send me flowers to thank me for holding down the fort while he went on vacation (yes, vacation). I asked him why one of the balloons says "happy anniversary" and he said "because it was the 10th anniversary of our engagement and I figured you thought it was a big deal since you were all bloggy blog about it." Note to self: sometimes Greg reads the blog.
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See, it's not just my mom! (since Jan 1, 2010)