Thursday, April 24, 2014

Plus Size Preggo repost: "One Big RACKET"

On Thursday, we had several appointments…one of which was with a Gestational Diabetes specialist. My endocrinologist has been subjecting me to random glucose tolerance tests (BLECH!) and having me monitor my blood sugar pretty much since the beginning of the second trimester, simply due to the fact that I’m obese and the obstetrician insisted I be monitored closely since I’m “more likely” to develop GD. Throughout the pregnancy, my results have bounced from borderline pre-diabetes to completely normal and back, but never conclusively YOU HAVE GD.
One of the OBs in the practice (whom I really never liked because she has a really shitty attitude about everything) decided to give me yet ANOTHER glucose tolerance test because she didn’t believe I hadn’t developed GD (nice, right?)…so I went to the lab SHE wanted me to, took yet another test, and it came back positive for pre-diabetes (again, not full blown GD, just that I COULD develop it, which obviously we’ve known from the get-go). Well, based on that, she decided that rather than retest to see why that test came back high when none of the others had, she’d rather just send me to a diabetes specialist despite what my endocrinologist said.

So, I went…in the waiting room, I met a woman who DID have GD, and she told me she could tell just by looking at me that I was fine, and started pointing out all the physical manifestations of diabetes that she possessed that I clearly did not. I felt good about just letting whatever the specialist said roll off my back, until I got in there and she insisted that I was endangering my baby just by being me. At least, that’s what I took away from the conversation, since my blood work was perfect, so if I was endangering my child, it’s not due to my sugars.

I got REALLY pissed and kind of took it out on the lady, who kept trying to win me over after I went off on her, but I let her know not to bother, she’d lost any hope of me liking her and she should just say what she had to say. Long story short, I was given a booklet on diabetes management and given a VERY strict diet to go on immediately. I was given more testing supplies and told that I was to send her my blood work results once a week for the next 3 weeks to make sure my pre-diabetes could be controlled simply by diet and that insulin wasn’t necessary. I KNOW insulin isn’t necessary because I’M NOT SICK, so I decided to make the best of it….ok, a diet and testing 4 times a day…big whoop. I can stand to eat better and testing isn’t SUCH a drag…if it’ll shut these guys up in only 3 weeks, fine. I’ll play along.

THEN I got a call on Saturday from the specialists office, letting me know that I needed to meet with a nurse AT HOME, and have her give me more supplies, including ketostix (sounds like they’re doing more than monitoring my diet)…and SHOCKER! My insurance won’t pay for all of it, just 70%, so I need to pay $200 co-pay in order to be put on this program that I’m positive I don’t even need. If I thought for a SECOND that I was truly endangering my son, I absolutely would be on board, but since I’ve started the program, my blood sugar levels have been IDEAL. Not just good for a fat woman or good for a pregnant woman, but SIMPLY PERFECT. This is just one big racket to get the scared fat girl to pay for crap she doesn’t need and to squeeze more out of the insurance. How about I just buy some ketostix at Walgreens for $15 and we call it fair that I didn’t just send the whole pile of people involved to hell?

So yeah. The diet doesn’t SUCK (in fact, it’s a LOT of food), it just involves a LOT of planning because it’s not easy to count exchanges for pre-packaged food, so I’ve been eating nothing but home cooked food SIX times a day for the past 5 days, and will be for at least the next couple of weeks. The baby’s movements have been more subtle since I’ve started the diet, hubs thinks it might be because he’s not hopped up on fruit juice anymore LOL
End of rant.

Friday, April 18, 2014

Weird Pregnancy Behaviors...

the things no one talks about.
originally dated 2/25/11
Since I’ve been pregnant, I’ve been having thoughts and urges that scare even me.

Namely, the urge to lick things.

I’ll wait for you to laugh. I find it hilarious, myself.

I’ve asked my mom if she ever had a similar urge, and she only giggled. I’ve googled it and found nothing. Even my husband can only smirk when I get a certain look on my face because he knows I’m actively holding myself back from licking something in my vicinity.

Now before you get any ideas, I only have had urges to lick food, and stranger still, the television when there’s an image on food on it. I haven’t ACTUALLY licked the TV (yet LOL), but this anxious NEED to lick the screen comes over me whenever something tasty appears! LMAO

My theory is that I’m having too many cravings to actually fit all these foods in my tummy at once, and lately I can only eat about half what I used to, but get hungrier much more often…so I guess maybe I want to lick things just so I can taste them without actually ingesting them? IDK…it’s the only thing that makes sense to me. Also, I’ve much more aware of textures in my food lately, so maybe I get the urge to lick things because I’m not interested in chewing them…(?) Any ideas/theories would be appreciated (and probably laughed at).

I’ve heard of women eating chalk and dirt while they’re pregnant, so me wanting to lick a chicken wing or a tamal isn’t THAT strange…is it? ;)

This was something I wrote on my blog back when I was about 7 weeks pregnant with my son. Have you experienced weird or unexpected inclinations during your pregnancies? I'd love to hear from other mommas so I know I'm not the only weirdo! hahaha ;)

Thursday, April 10, 2014

Walk Now for Autism Speaks...

This past weekend, we went to the Autism Walk in Miami. As I said previously, I don't support the organization monetarily, but I did appreciate that there would be many parents in my same situation all in one spot. I was also looking forward to gathering information about different therapy centers and schools for Bu. Rather than participate in the walk, we walked around talking to professionals, signed petitions, and played in the "sensory tents".

In related news, we've been able to restart speech therapy, order supplements for the next month, and we've even been able to set up some occupational therapy at home to supplement what he should be getting at the center...all thanks to people like YOU donating directly to an autism family (US) instead of an organization. So once again, thank you for your continued support.

Monday, April 7, 2014

On a personal note, THANK YOU.

When I wrote what I did "coming out" as an autism family and why I don't support donating to Autism Speaks, I never expected the response I got and I certainly never expected people to want to donate directly to my son for his therapies, supplements, etc. I'm overwhelmed at the generosity of the people around me and blessed to find so much support. Thank you all!!!!

Wednesday, April 2, 2014

In our house, Autism Awareness is all year 'round...

I wanted to take this opportunity, April being Autism Awareness Month and April 2nd being World Autism Awareness Day, to share something personal on the blog. As much as I post photos or stories online, I am fiercely private about my family life and I debated internally a LOT before finally deciding to put this out there.

The CDC recently reported that one in 68 children in America is diagnosed with autism spectrum disorders. The numbers grow more and more every year. It is yet unknown what causes autism, or what can be done to treat or cure it. It's an absolute mystery in every way, and the unknown is a scary thing.

My son "Bu" is that one in 68.

He is nonverbal. He self-stimulates by flapping his hands and sometimes pokes his own eyes or slaps his belly to receive sensory input. He does not pretend-play at all and rarely even notices when other children are around him. He shuts his eyes when he's overwhelmed. He's only recently become more social with family members besides my husband and me, and his eye contact used to be nonexistent.

He was developing on track until about 15 months old, when he started walking. As soon as he picked up this skill, he started regressing. He stopped clapping and pointing. He stopped giving high-fives when asked. I've been told by medical professionals that this happens a lot, where the brain takes up so much energy coordinating gross motor functions when learning to walk, that the rest of the systems suffer. It's supposedly quite common, though I'd never heard of it.

We saw a neurologist in December that specializes in children on the spectrum. She told us based on her observation and questions asked that Bu wasn't 100% textbook ASD, but that we should seek treatment as though he is because all signs point that way. We were told he operates on a 9-month old level (he was 27 months old at the time) and that a formal diagnosis would be made in a year depending on how he responds to therapies.

It's been 3 months since that visit. He's been on a gluten/casein/soy free diet for 6 months. He's on various vitamins and supplements and I add new ones regularly as I learn about how they might help him. We are working with an occupational therapist, a speech therapist, and his developmental pediatrician. Our team is truly phenomenal, and I couldn't be happier to have people that care so much about Bu helping us. His eye contact and social expressions have grown remarkably. He's far more aware of his environment and the people in it. 

Most days, I'm of the mindset that I'm going to kick autism in the ass. I spend every spare moment reading, asking questions online, doing webinars (explains why I haven't been posting as much lately, huh?). I've made helping my son and making his life easier my full time job. Some days though, I'm overwhelmed with sadness. I don't know if my son will EVER tell me he loves me. I don't know if he'll ever be able to have friends, to have a relationship, to have a job...what will become of him when I'm gone? These are all very real things that could and will be his experience, and it hurts my heart. Life is challenging enough, without this on top of it...and no one wants to see their child in a tough spot. 

I love my son and everything about him. I actually think sometimes (on good days) how weird it'll be when he starts talking because his little grunts and giggles are so much a part of him. It's strange to love someone so much as they are, and at the same time wish things were so different. I find many autism parents wouldn't dare say something like that, but I'm keeping it real. I love my son and I love the person he is. I do not love that his life will be exponentially harder than that of his peers because of something he didn't choose.

This weekend, I'll be going to the local Autism Speaks walk. I will be going to try to meet other parents in my huge city that share my experience, and to gather resources in my community. I am NOT, however, donating to Autism Speaks. Here's why: I don't donate to any causes that have walks or events because guess what it takes to put on these events? Money. There's no way of knowing how much of your dollar goes to research truly. Worse yet, I've never heard of a family with children on the spectrum getting financial help from these organizations. Research is obviously important, but as a mother struggling to pay for therapies, vitamins, a special diet, etc...research is something that's out of my scope. I'm actually considering opening a SmartyPig or GoFundMe for Bu to ask people for donations for his therapists because thanks to his crap insurance, he hasn't been able to see his OT for almost 2 months. The struggle is real. Really real.

So, there you go. This is our life. I plan to be much more open about our daily life, our regimen/protocols, treatments and how they're going, etc. When I first started looking up information on autism, I was both overwhelmed by all the stuff out there, and disappointed at how little it helped. So hopefully, the things I write about our experience helps at least one family. 

What can you do? Easy. 
-Do not judge. You never know if that child at the store having a fit is really a brat, or if he's having a meltdown because the sound of someone's shopping cart is overwhelming. 
-Don't ask stupid questions. "Are you sure? He doesn't LOOK autistic" helps no one. 
-Be kind. A child might not be trying to give anyone a hard time, they might just be having a hard time. It gets frustrating to not be understood. 
-Don't assume. We're a chemical free home and we do not vaccinate. These things happened long before the idea of autism even entered our vernacular and has absolutely NOTHING to do with Jenny McCarthy, thanks. 
-Be patient. My son doesn't usually respond to verbal cues from unfamiliar people, and rarely makes eye contact with most people. He's not being rude, that's just how it is. Don't take it personally and don't insist.
-Donate your time or money to FAMILIES, not organizations. We need them more than they do. You'll make a much bigger difference. This includes things like just asking how we're doing with the intention to REALLY listen and let us vent.
-Be understanding. People with ASD are still people. Not less, just different. 

For those of you that have asked how you can donate to Bu directly (and thank you so much for offering to help, I'm totally overwhelmed by the response!!!) I started a GoFundMe for him. Please make sure you read the whole description!!! And thanks so much again for your love and support! You can read more about our autism journey at All For Bu