Brave New World

This morning while trying to brush his teeth my son screamed as if he were saying "no." He then commenced screaming some more as if he had just discovered his voice. My son had a major vocalization break through last month and is slowly exploring his brave new world. Later this morning my doctor cleared me to return in 6 months because my blood pressure is back within normal range as were the results all of the blood work from last Friday. It seems that a decade of living with continual stress finally registered and after dealing with my husband's 2 ER visits and 2 nights inpatient plus a cardiac cath (thank God it showed nothing new) last week, I literally dropped him off home Thursday afternoon and took myself to Urgent Care. My body finally just said enough. So I took 48 hours to be scared almost to death while I processed the possibilities and by Saturday afternoon was back in fixer mode with an action plan along with the new blood pressure meds. It's been a week of consuming fruits, veggies and healthy proteins while avoiding starch and sugar as much as possible. So far so good. I'm not craving chocolate chip cookies. It's a lifestyle change as I explore this brave new world of looking after myself first. Securing my oxygen mask first before taking care of everyone else always made sense but in practice there never seemed to be enough time. Now I am reminded I have no choice. Doubtless many discoveries and challenges await my son and me as we explore our brave new worlds. Each day holds new adventures. The wonderful thing is that no matter what, each morning we'll awaken to a brand new opportunity to explore some more.

The Fixer

I'm looking forward to watching tonight's episode of Scandal (I'll catch it on my iPad at my convenience). The lead character explained in the 1st episode that they are lawyers, but this is not a law firm. She is a fixer. While I don't spend my days as a high paid DC crisis manager, I, too, am a fixer and truth be told, am very good at it especially because I come by it naturally. Growing up my father was a Boy Scout Professional but it was my mother who taught us always to be prepared. The only time I remember seeing her overwhelmed was the afternoon she learned that her father died. I arrived home from school to see my father holding her as she quietly cried in what was meant to be a very private moment. It didn't last long because there was just too much to do. Mom was on a plane within a few hours leaving the rest of us knowing exactly what we each needed to do before our 10 hour drive the next morning. My mother's last job prior to retirement was at an insurance company processing claims where the majority of her coworkers were the same age as her children. They made Mom their Judge Judy years before any of us were introduced via TV to the Honorable Judith Schiendlin. Seriously, if only God let my mother run the world all would be right. Juggling a full caseload including regular court appearances in 4 different towns before seven different judges was good preparation for raising a child with autism. Contingency planning is second nature. I usually am prepared for the inevitable although a few weeks ago I missed the memo that no Wendy's in Tucson is open for breakfast (my son only eats Wendy's chicken nuggets or Tyson's from Costco). Had I known I would have packed some Tyson's because the hotel room had a microwave. We were in Tucson (close enough to Phoenix to drive home if necessary) practicing staying overnight in a hotel. We're training for an August road trip to Portland, OR - an adventure guaranteed to provide plenty of blogging material! I look forward to the day my son's health allows me to re-enter the workforce as a project consultant. My resume will read "Expert Fixer - All specs will be met. No detail too large or too small. Every challenge will be resolved. Every system will be navigated. Guaranteed at a minimum to have contingency plans A,B & C readily available for full implementation and continual revision at a moment's notice. If all hell breaks loose and worst comes to worst, I am comfortable flying by the seat of my pants and figuring it out as I go along." ;)

I Don't Know But We'll Find Out Together

The psychologist who 1st diagnosed my 19 month old son after observing him for 20 minutes was right, but we put no stock in her abilities because she did not follow the best practice diagnostic standard of care (a decade ago it was 2 observations, at least an hour each, a month apart) and her client interaction skills (with both child & parents) frankly sucked. So we waited 3 1/2 months for an appointment with the best developmental pediatrician in the Southwest who just happened to be employed at the same hospital as my husband. We knew he was the best because we had friends and contacts across the country vet his CV. While he isn't Oprah famous (his mentor T. Berry Brazelton is), his credentials are sterling. Before we could see the Great Man himself we saw his Fellow. This time the appointment was very different. The Fellow spent an hour on the floor trying to engage our son while speaking with his parents. We were impressed with her abilities and grateful for her patient interaction skills (with both child & parents), but my reaction when she told us that she was 90% certain the Great Man would diagnose our son with autism after the next month's appointment certainly did not communicate that. I was told later on that unfortunately my instinctive flip into cross examination mode blitzkrieged her. After our appointment she tearfully told the Great Man that she didn't think I liked her. While it certainly wasn't my finest professional moment as a litigator, especially one with a decade of experience daily navigating "the system" and duking it out in Family Court on behalf of my clients, I was simply doing what I needed to do at that moment on behalf of my son, my most important client, in the only way I was able (hence the caution about she who represents herself has an a$$ for an attorney). I needed immediate answers before I could fully process the diagnosis and proceed forward. In that moment my professionalism and the rules of good advocacy went out the window with everything else except pure maternal instinct. I come by my maternal instinct naturally. I am proud to be my mother's daughter. There is no question that if God ever allowed my mother to run the world all would be right. When we met with the Great Man I asked him what we could expect in our son's future. The Great Man told us he didn't know, but we'd find out together. This is the best gift (besides our son whom we affectionately describe as our greatest blessing; our greatest joy, our greatest responsibility and our greatest challenge) that anyone has ever given us. Not limiting our son's future makes all the difference for us as does understanding that even the best experts don't always have all the answers. Admitting he isn't omniscient but willing to stand beside his patients and their families as we work together (he obviously skipped God 101 in med school) to figure out how to help our child grow to his fullest possible potential is an integral part of what makes the Great Man the best. During the past decade I've exchanged experiences with parents of his other patients and when they asked him about their child's future, he told them the same thing; I don't know but we'll find out together. Much has changed in autism land in the past decade. We now know so much more about effective treatment and we have so much more reason to hope for our son's future. Because of the advice and guidance of the Great Man, our family has weathered difficult challenges clinging to hope no matter what; even despite the gospel according to some so called (and too often self proclaimed) experts. From the beginning my husband and I quickly learned to separate the wheat from the chafe and find the available treatments and services that worked best at that moment for our son. Through it all the Great Man remains right beside us on this journey just like he promised the day we first met him. Together we're discovering our son's future while helping him grow to his fullest potential, whatever that may be.

If He Were My Student I'd Be Proud

In the middle of a more challenging than usual week (husband visited the ER 2Xs, spent 2 nights inpatient and had a cardiac cath ~ no new issues to worry about, thank God, recovering well), the public school district psychologist phoned in (yes it's legal) to a tri-annual meeting (the legally mandated opportunity for my son's IEP Team to request formal educational testing if needed) held at my son's private school (the district pays his tuition). According to the rules of good advocacy I should have kept my mouth shut. My son attends an amazing school with an amazing staff where he gets the education program he needs without any interference (their annual contribution is the check) from our public school district personnel. But I just couldn't help myself. This was the 2nd scheduling of the meeting (she never bothered to call in the 1st time). The week before she actually did drive out (we commute to school 50 minutes each way thru downtown Phoenix during rush hour) to school to meet and observe my son for a whole hour (1st time in 5 years. Previous district observations lasted 5 minutes.) Of course the observation only happened after an email from me (she blew off the 1st scheduled observation again without any notice to his teacher) reminding her that as parents of a school district child and as taxpayers we expected to be treated with the same courtesy as any other district family. In concluding the meeting she said, "If he were my student I would be proud of him." I threw caution and the rules of good advocacy to the wind and replied, "He is your student." She then retorted, "You know what I mean" along with a lame explanation. Obviously my email wasn't as effective as it needed to be because she still didn't get it. But I do know EXACTLY what she really meant and after a decade of dealing with teachers, therapists, doctors and other direct service providers along with the support staff and administrators tasked with keeping "the system" working, I am sick of people paid to help my son who just "phone it in." There is no excuse, period. In the past decade I have wasted countless hours inspiring those paid to help my son simply to do their jobs by using any way at my disposal necessary (as long as it was legal). I especially have perfected the "you are so overworked and underpaid" empathy. In direct contrast, in the past decade we have been blessed with teachers, therapists, doctors and other direct service providers along with the support staff and administrators tasked with keeping "the system" working who truly are members of my son's team doing all they can to help him grow and reach his fullest potential. His school is staffed with enthusiastic "kids" (I can call them that now that I am 50) blessed with infinite patience for whom no challenge is too great. My son's pediatrician reads about treating my son's ailments (he is her most challenging patient) when she can't sleep at 2 am. Our good friend spent the last 6 years as head of our State's agency responsible for providing services for individuals with developmental disabilities and their families. While you couldn't have paid me, or most anyone else, all the tea in China to do her job, she hung in there and shepherded the agency through draconian cuts while doing everything humanly possible (although I do suspect a touch of divine intervention) to protect the most vulnerable. Every minute I spend supporting and encouraging these people is a privilege for which I am grateful.