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Sunday, August 8, 2010

Getting Away Is Always Bitter Sweet...

I know I am not the only one that experiences this battle of feelings. When I am going through the motions of every day, I look forward to my chance to get away. When it happens, I miss them terribly and feel so bad....

Got a chance to go to Hard Rock Hotel & Casino in Hollywood, FL with a few girlfriends this week. I was looking forward to it for months. My mom got into town and off I went, only to feel so bad while I was gone. My guys can be tough, and spent the days testing limits and hazing poor Grandma. I was hoping to hit big and be able to send her away to the Bahamas for a few days to recooperate ;) I am so grateful to have her here and get these chances to escape reality for a few days...

I had a blast! Relaxed by the pool, played cards until the wee hours of the morning, ate & drank for free and won enough money to fund the whole trip! To me, that is a win!! If you can leave a casino after three days completely even, you won big!! I took pics of every guitar, hat, shoe, and outfit in the place! A music junkie's paradise!! Where else can you get in the elevator and hear Soundgarden?? We also met Ponch AKA Erik Estrada :) Still looks good for being 61!

All in all, a great time. I missed they boys terribly but am already looking forward to the next chance I can sneek away ;) Vicious cycle.....

Autism Mothers ROCK!!

Last week, a good friend of mine pulled off a photo shoot in a few hours, as the deadline for photo submission was two days later (nothing like the last minute!)

The Autism File magazine was taking picture submissions for a calender they are putting together. The concept is capturing images of strong mothers of children with autism from around the world. A text saying meet at House of Refuge with a black dress and attitude was sent out and nine hours later, we were together. What a blast!!! Some of my favorite gals, a few bottles of wine, a great location, and perfect lighting all came together to make one great photo! I don't even care if it makes it into the calender...I am just so happy to have it for the memories :) Love You Ladies!!!!

SFA Cocoa Beach Adventure...

Well, I have fallen off the blog scene in the past few weeks, so today I play a little catch up :)

SFA Cocoa beach was fun! I got to hang with some cool Moms and the kids had fun, although they hardly surfer...they were OBSESSED with the hotel's Pirate Pool. I decided to pick my battles and skip the waves...it was their weekend and if they wanted to run around in two feet of water all day, so be it!

Funny story, they played Friday night until about 10:30 pm, woke up the next morning begging for the pool. We hit the beach, they pouted, and I gave in. We headed back to the pool to find it closed!! OMG...EMERGENCY!!! I called and started to complain to the front desk and found out that someone pooped in the kiddie pool the night before (as they are pumping that water into the pool right where our kids were playing....) EWWWWWW!!! As this is happening, there is a mass baptism of about 50 people in blue tshirts occurring in the hotel pool...seriously?? You can't write this shit ;)

Aside from all of this, we had a blast!! Hung out with great people, had some drinks and laughs, and made some good memories <3 SFA pulled off another stellar event xoxo

I found out a week later that I have a fairy godmother that called ahead and treated us to our room!! I have since found out who it was, and a million thanks to that great gal!! What a wonderful surprise <3

Thursday, July 22, 2010

Our Adventure Weekend Ahead...

So I am super excited about our weekend plans. Heading north about 2 hours to Cocoa Beach for the Second Annual SFA Event and staying the weekend. I am broke as a joke, but this is the one thing these guys REALLY love to do and they have worked hard all summer with therapy so I decided to throw it on the Visa and think about it when the bill comes :) A few of my friends from here are going up too so it should be a great weekend! The hotel is right on the beach and has a big pirate ship in the middle of the kids pool...they are going to FLIP OUT!! Surfing AND pirate ships??? What else could they want?

I am a little worried about the rain in the forecast, but Mother Nature really watches out for SFA...seriously. There have been numerous events that should have been rained out and not a drop! Good things happen to good people...

The funny part is I feel like I am packing to camping for a month! Not only do I need the extra stuff that comes with two kids (toys, DVD players, toys, diapers, plenty of clothes, and did I mention toys?) I have to pack provisions for the weekend. That means three meals plus snacks for two kids over a weekend. I even bought a cheap toaster oven so I could cook their stuff in the room! Upgraded to the "Kids Suite" that has a fridge/microwave and a separate area with its own TV and bunk beds. We are going to look like we are moving in LOL.

So I will update everyone on how it went...wish me luck :)

Monday, July 19, 2010

I Must Confess....

OK, this may sound horrible to some, but to those that know me, you can understand because you know what a weirdo I can be about stuff.

As I mentioned in a previous blog, I am a real foodie. I was partners in a restaurant and did menu planning and cooking for special events/parties. I love nothing more than a fantastic meal with good wine, decadent dessert and delicious coffee.

I don't consider myself a bad eater. I hardly EVER eat fast food anymore. I love fruits and veggies of all kinds (except water chestnuts). Average meals are protein, tons of veggies, and a starch. I don't really drink soda, and if I do it is ginger ale. I do, however, drink a ton of coffee and have a sweet tooth, especially for good Tira Misu ;)

I also am a bit weird about food, too. Food carts can make me nauseous. I very rarely eat leftovers. I'm fanatical about expiration dates. I don't do restaurant buffets, and rarely do salad bars. I typically don't eat at "Pot Lucks" if I don't know the person or kitchen it came from. I can be weird about what I eat...

This leads to my confession. The boys have been GF/CF since November 2009, but we tried for a few months back in the beginning of 2008. I have never tasted a morsel of the things they eat :-( I Just can't bring myself to do it! It is "weird food" to me. The bread sucks, the cheese is horrible, and for the most part, it's completely unappealing to me. Does this make me a bad Mother? Is it really wrong? I feel so bad about it and know that the stuff they eat is so much better for them but I just can't do it.

I hate that they miss out on the good stuff. I have found things that they love and I am so glad about that, but it just kinda sucks. They won't eat what I cook and want to eat what they can't have, and so we settle half way...in the land of chicken nuggets, fries, pizza, waffles, cereal, pretzles, chips, and "Mocklate" bars...all GF/CF and mostly SF :-/ I dream of the day that they eat veggies, a nice grilled protien, and a starch...one day <3

Saturday, July 17, 2010

Community Is What It's All About...

I wanted to take a minute to reiterate how happy I am that we live where we live!

Florida's Treasure Coast is not only beautiful, but the communities have small town feel with all of the amneties of a big city. I have networked with an INCREDIBLE group of families that I am so happy to consider friends. Sure, the economy is in the toilet and the housing market is crashing, but that is the story all across our great nation. What I really can't get over are the things made available to special needs kids. I am not talking about traditional therapies like speech, OT, and ABA. We have some fantastic therapists here that do great work with our kids(a bit of a shortage on certified Behavior Analysts but I'm doing my part to help fix that!). I am talking about a type of "Alternative Therapy"...not HBOT or Infared Saunas, but things that bring smiles to kids faces and make them feel like everyone else. Surfing, baseball, swimming, sailing, kayaking all designed to help families with special needs kids experience thing they may not have the opportunity to.

Now, first and foremost, Surfers For Autism...my heroes!! This grassroots orghanization travels up and down Florida's coast bring the joy of surfing to these incredible kids. The surfers smiling as big as the kids and families...a truly moving experience!

Then there is Challenger Little League. Uniforms, helmets, and trophies provided free to all that participate. Kids get out and experience the feeling of running the bases, having fans cheer them on :)

Sunshine Swimmers is a group of local high school students that spend their Saturdays teaching kids how to swim (CRUCIAL in South Florida, as there is water everywhere and drowining is the #1 cause of death in children with ASDs). They are swim certified through The Dan Marino Center and do this out of the kindness of their hearts. Jack now swims like a fish and by the end of this session, Owen will be right there with him...say goodbye to the floaties!!

As I was watching them swim today, a mom gave me a flyer for Access H2O...a group that takes kids out sailing and kayaking once a month...we are going tomorrow :)

It is a sense of community, togetherness, and inclusion that makes my area a great place to live. For that, I am truly grateful <3

Wednesday, July 14, 2010

Reporting Live From The Scene of A Bio-Medical Intervention...

At times, I feel like a mad scientist. Hunched over sippy cups so they can't see me...adding a powders and liquids to juice, hoping that they can't smell/see/sense the stuff in there. These kids have the noses to be world renouned sommeliers ;) We have been GF/CF since November 2009, working in probiotics soon after. In May 2010, finally found a way to sneek Omegas. Jack takes a bunch of gummy vitamins and fiber...Owen won't. He puts them in his mouth, gets them wet and spits them out. I usually find them in his hair requiring a "snizzors" (as Onie calls them). We use melatonin to get to sleep and honestly i don't know where I would be if I hadn't discovered it.

Anyway...next step, Methyl B12 with folinic acid and N-Acetyl Cysteine. The mission began to find a local pharmacy to compound it into a liquid. Finally find one but the pharmacist tells me, "Oh you can't mix this with juice, they have to take it orally." What?? Excuse Me?? Ummm, OK if you say so...I can't do this, right?
I'm a Mom who spent ten months having to administer suppositories every few days so the kid wouldn't explode, this B12 will be a piece of cake....Right??

WRONG!!! Complete traumatic nightmare for all three of us involved. B12 is red, so combined with the spit and fighting me to get away, it looked like there was a crime scene in my bathroom every morning. Not a good way to start the day...

OK...next option, the shots. If they were diabetic, I would give them insulin so if this helps them, I gotta do it. Yesterday was their first dose. They ran around like maniacs for almost an hour and then, out of nowhere, they sat at the table and started to play with Toy Story figures...TOGETHER! Most of their play happens next to each other, but rarely is it real, genuine play WITH eachother. Their interactions are mostly physical...running, jumping, fighting ;) Talking, moving figures, acting out a scene (from Spongebob but WHATEVER!). I didn't make a peep, afraid I would rattle the energy and send them off to their own spaces. This went on for close to 15 minutes.

So, do I chalk it up to the B12?? I know it takes more than one, but maybe this is a good sign. They felt a little better. That is all I want...I just want them to feel better...so a shot in the ass every few nights it it :)

Funny, some people critize the shots. I say, it's vitamins...can't hurt them as bad as the ones that did this to them....

Sunday, July 11, 2010

Why can't we all just get along???

I felt the need to blog about this. It may not be relevant to some readers, but I think it just goes to show the mentality of some folks that we share this world with.

Over the past few months, I have made a bunch of Facebook friends with some incredible men and women dealing with Autism in their lives. I "met" a lot of them in the chat room for the AutismOne conference. We sat in our respective homes, in different cities, states, and countries all logged on to learn what we could since we couldn't attend the Chicago event. While watching, listening to incredible speakers,and learning new information, we chatted about the topics, our kids, and our world of Autism. Many of us added each other on FB. I am so happy to have "met" these folks. We share information, give support, and provide some much needed comic relief to this sometimes crazy world we live in.

I have met folks from Canada, Europe, and Australia. Parents from California, New York, and everywhere in between. All different in so many aspects, yet all the same in the fact we are live with autism everyday.

I am proud too "know" so many of these folks...some true "celebrities" in the community. Kim Stagliano, Curt Linderman, and the one and only "Tanner's Dad" to name a few:) I have met a few that I wish lived closer so we could hang out...truly great folks!! Warrior Parents who won't take no for an answer.

Over the past few days, I have seen numerous posts about people harassing, stalking, starting fights, and even creating fake profiles to mess with people. SERIOUSLY??!!?? REALLY?? I use FB to vent, check in with folks, and share info. If you have time to harass and stalk, you have too much damn time on your hands. Here's an idea! Take your kids outside, go build blocks with them, ride a bike, or read a book. My peeps don't have time for this cyber high school bullshit, we have children we are trying to heal! We are struggling to keep families together, pay bills, fight insurance companies, prevent meltdowns, stay pseudo-sane, and clean up shit...literally! If we can't be united in this front, regardless of our beliefs, then you aren't fighting in my battle and you are certainly not on my team. I have not had any issues personally but I see some folks really getting put through the ringer and it is bullshit!

I don't agree with everything everyone says, but we can agree to disagree...this is the beauty of human intellect! So, to anyone who doesn't agree with my views, language, politics, or religious beliefs and simply can't accept them...the remove button is on the lower left had of my wall...feel free to use it. And when you are done with that, go kick rocks.....

Thursday, July 1, 2010

Why do they make everything such a damn fight?

You know, I really could scream most of the time. Sometimes I think that the only reason Autism Moms don't crack up is because subconsciously we know that if we did, who the hell would take care of our kids! My frustration is not with my children, but with the red tape and bureaucratic bullshit that you have to go through. Jumping through hoops, begging and scrambling for services that these kids need....like this shit isn't hard enough!!

Insurance companies, government, and big pHarma should be ashamed of themselves. We have an epidemic of disastrous proportion happening right now! One in 91 kids...it makes me sick just typing that! The other day I heard a news report that obesity in this country was an "epidemic" and government is scrambling to address the issue. REALLY??? I'm sorry if this offends people(but you know me) but obesity in this country should not be top priority. Stop eating McDonalds and drinking cokes, get out and go for a walk. Autism is the real epidemic and no one wants to help.

I just got off the phone with my insurance for the kids trying to get ABA Therapy for them. The woman told me "Autism, PDD, and Mental Retardation are not covered" WHAT??? Are you fucking serious!?!?! Gastric bypass, viagra, and boob jobs can be covered by insurance and they won't give these kids the treatment they need and deserve? It is a friggin' disgrace. They can provide me with a psychologist for them though. Really, thanks but a shrink is not going to help my kids, especially since they can't tell you what is going on with them. The don't need a shrink! I need their medical conditions to be addresses. I need HBOT. I need ABA to help them learn to handle their environment better and not hurt themselves. I need help paying for their specialized diets and supplements! Life every day with autism is hard enough, why does getting them the help they need have to be so hard too??

I will take the insurance company up on that shrink...I think I may need one! Oh wait, I don't have time for couch sessions...I have children I am trying to heal!!

When will people wake the hell up and realize if we don't take care of these kids now, they will be a drain on "the system" in adulthood. Nothing like a little pro activity.

Thanks for nothing!! So glad that I am a tax paying citizen, look what it gets you?

God Bless America...or should I say, God HELP America :-/

Wednesday, June 30, 2010

Me?? On the radio?? I don't even like the sound of my voice on the answering maching...

Well, I guess my little blog that I created to be a place for me to bitch has gotten a bit bigger than I expected.

I was recently contacted by ICAA (International Coalition for Autism and all Abilities) to be on their radio show in August to discuss autism in my life. Seriously?? But I curse in my blog! What can I possible say on the radio to help others?? Pretty cool but I have to admit, I am freaking out a bit!

I will keep you all posted...who knows, maybe I will end up with my own radio show one day....imagine that! LOL...the FCC would have a field day with me...

Stay Tuned :)

Tuesday, June 29, 2010

Gluten Free, Casein Free, Soy Free, Money Free...

I think it is such a shame that to eat healthy, you have to sell your kidney!

I just got back from my weekly trip to Nutrition Smart (my local health food store) and once again have sticker shock. Four bags of stuff is over $200 bucks! Thank God the lady at the register knows me and slips me coupons now and then. The Autism Moms alone that shop there are probably keeping the place open! Granted, I got some supplements as well but seriously!?!

This is why so many Americans eat sh*t food...it's CHEAP!! GF/CF/SF foods are typically produced in clean, dedicated factories to be sure there is not cross contamination with potential allergens. I understand it costs more to produce and manufacture, but I see how people simply choose to shop at Wally World (Walmart). Mass produced food is cheaper and in this economy, every penny counts. I am just starting to get my whopping $204/week unemployment so thank goodness for Visa cards.

I know what my seasoned GF/CF/SF friends are saying..."You have to cook from scratch, it's cheaper" Tried that...no good. My boys have a very selective pallet to say the least. If it isn't the "Fab Five" of food selections, we have a hunger strike on our hands. I love when people say, "When he is hungry enough, he will eat it." Not some kids, I'll tell you that! I have decided to pick my battles and simply make the "Fab Five" GF/CF.

You have to know that I am a die hard foodie! I eat any fruit and vegetable (except water chestnuts...tastes like a raw potato). I love to cook and ran a restaurant for two years. Customers were so sad when they heard I was moving because they would miss my food. Such a twist of fate that I have two kids that are so averse to most foods.

Owen is a tad bit more adventurous, but still limited. Jack, on the other hand, has such sensory issues with food that he will gag at the site of some things. He has even gone so far as to puke where he stood when he saw me eating nachos with sour cream. Now, I have a weak stomach but this guy takes the cake!!

So that being said, I will continue to do my weekly Nutrition Smart runs, selling blood if I have to in order to pay for it. To those who are not trying the diet due to cost, you have to do it! What if it works for your child? Isn't it worth your last penny if it makes these kids feel better? Whatever it takes, right folks :)

Sunday, June 27, 2010

A Sorority I Didn't Pledge...

As many of you may imagine, I wasn't into the whole sorority thing in college. "Pledging" was not my cup of tea. I have friends that did it, and we hung out with some fraternity guys (they had the best parties!) but never once did I have a desire to belong to one. To each her own...

I do however, have a small circle of girls that are my sisters. A Fabulous Foursome. Suzanne, Claire, Denise, and myself were inseparable. WE HAD THE BEST TIMES!!! From simply taking drives around the neighborhood listening to the radio, late nights trips to Dunkin' Donuts/Walgreen's to get a coffee and buy a ton of crap we didn't need just because. We were the Concert Crew!! Any show that was going on that we wanted to go to, we got tickets, regardless of demand. The stories and memories we have are incredible and will make me smile until the day I die <3 They were my chosen sisters. Although we may not speak every day now, in my heart they will always be my girls :)

These days, I find myself in a new group of incredible gals. We understand each other and can relate. We are all mothers to incredible, funny, and beautiful children that struggle with autism. A sorority I didn't have to pledge, but the hazing comes after the fact. A sisterhood of Mothers that are the strongest bunch of gals I have ever met. Who else can you talk to about poop consistency, meltdowns, and stim sessions? We all have stories that are so different, but the same. We are each other's sounding board, resource center, therapist, and comic relief. These ladies are all so important to me and keep me going. This is not what any of us dreamed Motherhood would be, but I must say I think we are doing a pretty incredible job given the circumstances...Head Up, My Sistas :)

Saturday, June 26, 2010

A Doctor you can trust and gives you hope?? What a novel concept...

For the majority of my life, I have always trusted dctors. That's what you do, right? They know best and are there to help and heal you. Take this pill, have that shot...Doctor's Orders. Boy, I was naive...

I knew something was going on with Jack long before his official diagnosis (like the majority of Moms I talk to). He projectile vomited, had weird sores, thrush, and was given antibiotics on a bunch of occasions. He did this thing we called "Box Mouth"...hard to describe but I realize now they were mini seizures. Whatever the pediatrician (we will call him Dr. Soprano) reccommended, I did because I actually liked him, I trusted him. Mind you, I had absolutely no idea at all about a vaccine/autism link. I had no clue what Thimeresol was...none of it! If I knew a sliver of what I know now back then...shoulda coulda woulda...

Anyway, one day I flat out ask Dr Soprano if he thinks Jack had autism. He was developing on point but the words were not coming. He stood there in his cabanna shirt with his hair slicked back, big smirk on his fat face and said, "Look at this kid? Does he look at you? Does he hug you? Does he know his name? This kid is fine! Boys talk late". He basically chalked it up to another case of NMS (Neurotic Mother Syndrome). WHEW!! That was a relief. If the Doc says he is fine, he must be fine. I countinued to hold him down for those fucking shots, once doubling up on a dose to "keep him on schedule". Thanks Dr Dickhead! I often think about the other mothers that came and went through his office he diagnosed with NMS.

Anyway, about the time that Jack was waiting for an official diagnosis, Jenny McCarthy's book came out. I devoured it in one sitting...sobbing at points, yelling at others. I had no clue about any of this shit!

I lost faith in doctors, most of them anyway. At any point that I brought up biomedical treatments or possible gut links I would get the fish eye...you know the one. You can read it on their faces..."Oh No, not another quack Mom who thinks the diet will work". I wanna smack that look right off their faces when I get it.

Recently I was introduced to The Brain Training Center. Dr. Lisa Rankin and Dr. Marty Rukeyser have brough a new spark of hope back. Dr Rankin is a fellow autism mom and believes in biomedical treatments as well as Hemispheric Integration. Put it this way, I brought up Glutathione to her and she was like, "I was just going to mention that to you!"....WHAT??? No fish eye??? A doctor that is on the same page??? SERIOUSLY!!! She answers emails on vacation, listens, is willing to try whatever will work for the individual child...SO REFRESHING!

I leave that office after sessions (we go twice a week) feeling good, rejuvenated, hopeful. The boys LOVE it and actually ask to see Dr Marty and Dr Rankin! You know they are good if the kids want to go ;) It feels so good to have these folks on our team and I am looking forward to great things in our future. Thank You BTC :)

Friday, June 25, 2010

Starting Out With This Blog...

I've tried starting up a few blogs and never follow through, but this time I am serious ;) I've decided I need a place to talk about Autism...The Good, The Bad, and The Ugly. My hope is to not only help others who feel alone, but to spread awareness so people can understand what it is to have autism in your life. I am rated R and will not edit myself. This is the real deal...Autism isn't pretty.

I look forward to sharing my experiences with readers and am looking forward to feedback!