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!