Sunday, May 12, 2013

Grief & The Rantings Of A Woman Pissed Off At The World

CEASE Update... We are still on Hib. I've lost count of the number of weeks, and I don't feel like looking back on my notes. This has been a stressful clear for both of us over the past few weeks. We have finally moved up to 10M dosing and I think we will be finishing this clear by the end of the month. Fingers crossed.

I am ready to move onto a nice little break from CEASE. I think I will take 4 weeks off this summer, and really try to get a feel as to how his GF diet is benefitting him. We went into GF transition right around the same time we started the Hib clearing, and it's been hard to determine what is diet, and what is CEASE as far as the gains that he has made. I am hoping to refine our eating a little bit more. I've been researching all the diets that claim to be incredible for autism, and I'm not sure which path we will take yet.

I've been looking at GAPS for the past several months now. The before GAPS/after GAPS videos of autism kiddos online has definitely been compelling me. However, I joined an online GAPS group, which has probably been the best source of information. Concerns have been raised about the diet for me by GAPS dieters discussing issues like tooth decay or hair loss. Something about both of those potential side effects is an indicator that it might not be the best choice for Jonah. I think we will skip the GAPS train, although I do like the principles behind gut and psychology. We will likely continue to remove grains slowly, work on reducing sugar and eliminating casein for a bit to see how it goes. I am game to try it in hopes that it helps Jonah more. If it doesn't, at least I know. I don't think Jonah has a sensitivity to dairy, but then again I didn't think either of us had issues with gluten. We clearly did. I can still hear his sweet little plea "bread?" when we were going through yeast die-off. This kid didn't really like bread to begin with, but he asked for it constantly during die-off. I craved it constantly, so I understood immediately what he was going through.

As difficult as the behaviors with the Hib clear and DTaP before that have been, we have been seeing some tremendous gains. When he isn't aggravating, I've been catching these glimpses of a normal kid. Normal- as in nuero-typical. Speech, although still difficult to understand at times, has been sounding clearer. He's been super motivated for interaction with me via playing board games again, or tag. Every evening when he comes home from school, he reads 5 books for 10 chocolate chips. He's been drawing and demonstrating imaginative play. He loves to help make his lunches and is showing more signs of independence. He is generous, sweet, and compassionate. I get this peak of gestures and expressions that look and sound like things a normal kid will do. It lasts for just a few seconds.

And then he gets a maniacal look in his eye just before he giggles, darts and lunges toward the kitchen counter in hopes of grabbing the glass of water next to the sink and hurtling it across the room.

And then, I get PISSED OFF at the world. The world as comprised of a closed-minded subset of people that makes up the majority of the American culture. The people that follow doctors orders and eat nothing but Special K for breakfast because they are on a diet. The people that have a prescription for EVERYTHING. The women who drive luxury cars and carry designer purses, but are concerned about the price of organic foods. I could go on. This is the mindset that I was a part of and I hate it. I resent it. This is the life that brought me to where I am today as a mother. This is the lifestyle that robbed Jonah of a normal childhood. This is the commercialized, processed, over-prescribed, standard-American-B.S. that has robbed (and will continue to rob) countless children of a normal life.

I get so PISSED that my child has to go through this. That my child is sick. That my child was sick and I didn't even know it. 

"It's just kids being sick." 
"It's just eczema." 
"Kids are picky eaters." (He wasn't picky. He just wouldn't eat. He wouldn't eat ANY-F-ING-THING!)
"Kids get colds all the time."
"Some kids don't grow much between 2 and 3 years of age." (2 lbs?! That's it? Is that normal? Sure didn't seem normal, but why didn't I question it!?)

I was so stupid. How could I have been so stupid? The whole reason I chose our previous pediatrician was because of this as follows... I asked him about the concerns regarding mercury in vaccines. At the time, I didn't know much about it, and had only seen and read small little blips about it in the mainstream media (which really means that even though I was asking about it, I had no idea what I was asking about). He reassured me that vaccines were safe, and that they had low-dose thimerasol vaccinations on-hand. Well, that sold me. 

At one of his vaccine appointments, the nurse complained that I chose to go with the low-dose thimerasol vaccines because it required 5 injections instead of the 3. I actually rolled my eyes over at my friend who had accompanied us on the visit and responded "Well, it's better than risking my child develops autism." 

I was so fucking stupid.