Happiness by proxy

that DAN doc consult left me feeling
something like this.

Sadly, I was wrong about Jonathan's last chelation. On our last phone consult with our DAN practitioner I got the news he STILL has lead in his body per his last set of labs. I called my husband the day of the consult and desperately tried to hold back the tears while I was driving. I was consumed by grief, sadness over our future lost happy weekends, gone to chelation and the money, expense and aggravation spent to get there. One reason I love DH is his never ending optimism when it comes to J. He said to me, in a voice as calm as a still lake, "well that means he can improve more, so we'll do it". At that moment my tears dried and I calmed, shook by his insight. He was right, more chelation meant more room for J to improve. So I tucked my tail between my legs and accepted the fact that we have more chelation for J to complete.

Yesterday was our third chelation back on schedule. While most families are dressing in their Sunday best to go to church, we were packing the cooler with snacks, grabbing books and DVDs, and sending the kids to the bathroom for one last bathroom run. All hail Autism recovery, our sole religion. We got on the road late but since we've driven the route so many times we made excellent time. J took his IV like a champ and we were in and out in a flash. This process is getting easier on him too, thank god for that.

After chelation yesterday we went to the beach. The beach we visited is about an hour south of where we live. We would never normally take the time to drive there. We just happened to be in the area for J's chelation. It was a stunningly beautiful day. The beach has a marble mix of white and black sand, crystal clear aquamarine water and had a sky that exemplified the color "sky" blue. We swam, splashed, frolicked, hunted for shells and sharks teeth and had an effervescent time.

Oh gluten, you dirty, dirty gluten!

As we drove home feeling sun weary but soul sated this thought burbled up to my conscious thinking. I'm beginning to enjoy J's chelation and IVIG. Don't worry, its not "the enjoy like putting Pine-sol in my kids oatmeal, kind of enjoyment", its more like, that is our only family time and we are making the best of it, kind of enjoyment. I think unknowingly we've begun to make the most out of those days. I've come to relish the "after" time. I enjoy the side trips to the beach. I enjoy the snuggles, movies, and chocolate cafeteria cake (which I would never make at home, contaminate my cookware with Gluten, please) during IVIG. I enjoy the ride to and from our IV destinations, it gives hubby and I time to talk. I enjoy talking to the nurses who know us, and appreciate our situation. I used to gnash my teeth with worry the night before an IV for J (don't get me wrong I still HATE it) but as time goes on it gets easier on him and easier on us as a family.

Now I think (think being the operative word here) that we have less than one year left of chelation. I don't know how long he will have IVIG. This time around I've decided to take as it comes. I'm deliberately taking my eye off the finish line to focus on the people and scenery around me and I plan to relish them both.

Righteous ANGER!

I have days where I can accept J's Autism in stride, either because he is having a high functioning day or because the hubby and I have had sometime together. We have much to be thankful for. I love those days, the days where I see dear hubby toss Jonathan into the air, the days where J steals my cell phone to be mischievous and funny, the days where J's eye twinkle can only be rivaled by that of a jolly guy wearing red that lives at the North Pole. We have days with children's laughter, sandy toes and cuddly kisses, those low stress days, few and far, between sustain me.

Today is NOT one of those days. I'm playing go between with J's DAN doctor and his immunologist. The DAN doc wants to raise his IVIG level to correct his immune system dis-regulation. He has NO IgA antibodies and off the chart IgE antibodies. The doctors have already had a pow-wow, which I'm sure our insurance was charged for and we spent precious funds on. The doctors agree we should do a scratch test to hopefully figure out what is causing the off the chart IgE levels. On J's only day off from therapy I pick him up from school early to take him to this fun event. I drive an hour, in the rain over a VERY high bridge to this appointment. Fifty pricks on a squirming peeved child later we found out something we already knew, J's has no IgE reaction too any common food. So I ask the Immunologist/Allergist what is causing his high (ten times higher than normal) IgE levels? He answers me casually "could be environmental, we'll do that test in a few months". Oh and by the way your insurance most likely won't pay for the higher dosage of IVIG. So I've now wasted, precious time, gas, funds and the sanity of my child's only day off. I drive home fuming about the wasted resources and lack of care from mainstream medical. When I email to inform the DAN doctor of the insurance rejection, they have more options. Options are good but they lead to more work for me. More phone calls where I walk the perilous line between being considered pushy or stupid. Of course this is all needs to be done at the speed of light because we have an appointment for IVIG (that I'd scheduled in advance so as not to miss any therapy, again on J's ONLY day off) in less than a week. You try to rush two doctors, FUNNNN TIMESSS!

Yesterday I got J's first IEP for his new public school. I think I may have mentioned that I like IEP's about as much as having my eyeballs sown shut with out anesthetic. We have a whole half hour to discuss this child's goals for the entire year, sure that sounds adequate. So his teacher and I have been sending lengthy emails back and forth, trying to clear up any issues before the actual meeting. Since this is our first year I tread the fine line between being labeled a Bitch and being a push over setting the future tone for all school meetings.

I also got both my boys progress reports today. Those were fun to read, both are behind and having behavior issues. Logically I know life makes no guarantees but I was hoping to get ONE easy kid! My "NT" child is having more school issues than my ASD kid.

I also recently found out the school I want to attend cannot be done online. I will have to pay around twenty-five thousand dollars out of pocket somehow. So the idea of home ownership meanders further down the lane like a mirage shimmering in the distance. 

After everything over the course of this week, it is time to turn to distraction, it's either Facebook or a heavy bought of drinking. I don't have any liquor in the house so Facebook it is. I log on to see this:

Truthfully, this made me want to smack someone (LOL at the opposite effect)! Please don't misunderstand I'm all for civil rights and MLK. Dr. Martin Luther King was a truly great man, with great ideas for humanity but anger is human, to repress it is unrealistic and unhealthy in my opinion. So many of the "crunchy mommas" avoid expressing any negative emotion online. While I love most of their ideals, this seems completely insane. No one says I'm sick of my kid, I'm frustrated with my life, I hate my period. It always some life affirming thing, for example, recently someone referred to their period as a sensitive time of reflection, ummm ok. I can understand that you may feel that way ten periods out of twelve but EVERY WOMAN has one period where she wakes up with a serious case penis envy. 

Well I guess I don't have that luxury. My life is a constant struggle to maintain sanity in a insane world. I feel like

Detective Del Spooner (from I, Robot): "Let me ask you somethin', Doc. Does thinking you're the last sane man on the face of the Earth make you crazy? 'Cause if it does, maybe I am". I have a child with Autism with serious bio-medical problems. I have another child who I suspect I should be treating bio-medically but cannot afford to do so. I have IEP meetings, teacher conferences, many, many, (insert specialty here)ologist's appointments. I have SCD cooking, budgeting woes, scheduling frustrations. Plus I have my own personal dreams that linger around the edges of my consciousness.

I live in a world where pizza sauce and high fructose corn syrup are "vegetables". I live in a world where injecting babies with potent neurotoxins is the norm. I live in a world that denies the Autism crisis while continuing to cause it. I live in a world that creates children that cannot function and then refuses to help them achieve Independence. I live in a system where only the worst victims with the best advocates and the most money get help. I live in a world where you have to lie and cajole to get what little help is available. I live in a world with a broken system and I AM ANGRY.