For Mothers Day I got guilt and a sunburn

To my chagrin I saw many FB posts before Mothers day about mom's spending the day with their kids for mothers day. I know many of those moms didn't have childcare I understand that plight, BUT is it wrong to want to be away for "Mothers" day? If you can't get a break on "Mothers Day" when DO you get a break? Those motherhood-is-shiny-and-glorious posts accompanied by magical sunset photos remind me very much of another bloggers post "Don't Carpe diem"  http://www.huffingtonpost.com/glennon-melton/dont-carpe-diem_b_1206346.html. Personally, I wanted the day off more than any pesticide laden bouquet but you've got to love social networking, its a great way to impose/assume guilt and judgment without actually speaking to a person.


I spent the day today, away from my children. That is right for mothers day I took, bum-bum-bum, the day off. Well at least part of the day. I've had this kid free beach trip dream for about three years and between myself and my best friend, it's taken us both one divorce and this amount of time to get child care so we could go to the beach for ONE (half) day and have time to ourselves. Well, I'm experiencing the after glow of my first kid less trip to the beach in over ten years, wait maybe that's is a sunburn......

 It was extremely relaxing to go "restaurant" (Ok, McDonald's) and not worry about packing food my kids could eat, avoiding the ball pit, eating hot food without serving others, watching for the rogue fry indulgence, enjoying leisurely conversation without having my neck on a constant swivel aware of where my children might have gone too or what they might be into. On the way to the beach we spoke freely, using whatever language I felt like using at the moment without self censure worried that my words may be parroted at the worst possible moment, most likely to my child's teacher.

At the beach I actually relaxed. I didn't have to worry about rip tide, traffic proximity, the sting ray shuffle, organic heavy metals free sunscreen or my kids tendency to pee into the shore line twenty feet from people fishing (yes, that actually happened once).

Ah, I breathed in a few deep breaths. Those blissful moments of sun baked laughter, tranquility and shared relaxation are going to have to last before I go back under.

Monday morning begin holding my breath again for:

IEP meetings
Dan Doctor protocols,
Dan Doctor appointments,
Therapy meetings,
School Board meetings,
Teacher meetings,
Learning ABA
Food preparation,
Camp planning,
Doctor appointments,
Insurance hassles,
Florida Government bill research

and those are just the things related to Autism, not even regular mom stuff...................

Looking at all I do, regular and Autism related, beyond the "to-do" list of day to day list seems overwhelming.  So I will take one (half day, lol) to myself without feeling guilty. I will make more time to resurface and refuel (before I pass out and cause brain damage).
.



 ,

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.

Autism reading, library trips and slips

I am a reader. Not to sound pretentious but most television programing shuts my brain down to the Terry Shiavo pull the plug stage! Most nights I have my nose stuck in a book. The library system I'm privy to isn't exactly a complete collection, if you get my meaning, BUT they have been good to me over the years. They were always able to get what I wanted. For the last six (seven in October) years I've had at least one squirmy little body protesting my choice of a playground for the mind vs.  playground for the body. So I've learned about requesting books online via the library website. I must admit I feel a bit guilty because this service has helped me turn the library staff into my very own personal shoppers. I still take the boys to the library, much to the chagrin of other patrons and quite a few library staff members (who I've repeatedly told about J's Autism, another topic for another time). Those trips are designed encourage their love of reading and for me to pick up the books I've reviewed and requested online. Much to my personal joy I recently found out how to request ILL (intra-library loans) online (without a phone call or a in person request, ah my inner Aspie sings). So I'm on a reading spree, getting books I've wanted for years and couldn't get my hands on!

Intra-library loans are loans of requested materials from nearby library systems that have your requested book or material and that are willing to loan the book out.

So I read yet another Autism book over the last few days, "All I can handle, I'm no mother Teresa" by Kim Stagliano (thanks to a online ILL). Even the foreword begins....another Autism book, and boy do I get that sentiment. When J was first diagnosed I went to library and checked approximately half of their (then) Autism related reading material (excluding fiction). Of course their Autism collection has exploded since then to reflect the ever growing need for Autism information due to exponential diagnosis rates.

After I slogged through the first year of J's diagnosis I slowed my reading down a bit. In part due to the absolute necessity for mental rest (I'll write another blog at some point about the panic attacks I was having then) and J being under the care of qualified DAN (Defeat Autism Now) doctor. I had him enrolled in a school for kids with Autism. So I felt the two main aspects of recovery, bio-medical treatment and education/therapeutic intervention, were covered. At that point I began to tread water instead of gasping for air while being pulled along in the rip current that is Autism. I was still just trying to make it through the daily routine, having food prepared (lots of SCD meal planning, cooking, shopping) transportation to and from the school, with little money to maintain a vehicle or gas to fill the tank, finding grants to cover the out of pocket cost of the private school, taking care of another "NT", but difficult child, and a few household moves along the way. In other words my reading/research momentum slowed to snails pace. Since I had consequently devoted the last year to Autism research I took a well deserved and much needed break from Autism books. I read only things that could take my mind away. I truly believe science fiction saved my sanity!

Thank You Terry Goodkind, for faith of
the fallen!

The reality is I still read Autism books, I'm just a bit keener in my pickings. I don't read many bio-medical books because I think many of the bio-medical books have the same common sense message, treat your child's physical symptoms of Autism as well as the other symptom's. I try to continue to educate myself and I will read bio-medical books that have topics I unfamiliar with or newly renowned books. I feel there are many bio-medical topics which I'm out of my depth on so I trust our DAN doctor to handle those topics. Being an Autism mommy means being a leader, and that's one task I'll gladly delegate.

A breech birth is but down vs. head down.

I still read first person accounts, to a degree. Another strange practice I learned via midwifery, surround yourself with positive images and ideas. I swear this isn't from when I read "the Secret"! While I was pregnant with my second child I told my midwife I was afraid of a breech birth, that I'd watched too many episodes of ER. She agreed with me saying "even Abby (on ER) had to have an emergency c-section". So with Autism, just like with my pregnancy I cut out all porn, birth-porn (that's what our childbirth instructor called it because its heightened and unrealistic compared to real life births) and Autism-porn. I love that phrase, birth-porn, to this day (I just coined the Autism one). I look at it this way, I will do whatever I can to help Jonathan but I've got to believe its possible. I know the reality of Autism, heck we live it everyday. I know the statistics. Watching, hearing and reading negative media reports won't help me recover my child, so I avoid them.

These days I just space out the Autism books so that I don't overwhelm myself. Sometimes though, I wonder why I read them at all? Reading that book didn't tell me anything I didn't already know about Autism. In fact, at many points in the book I openly wept at the obvious parallels between their lives and ours. Is Autism the horrific roadside collision I'm rubbernecking at?