Waiting for the Other Shoe...

When we were dating my husband confided that one of the downsides of having Attention Deficit Disorder is that he spends life waiting for the other shoe to drop. Things improved after he began taking medicine almost 20 years ago and got even better when he married a wife who has his back and 99% of the time picks up his loose ends (even fixers are off their game once in a while). Yes, I was the annoying student and then the diligent lawyer who 99% of the time succeeded with hard work, talent and true grit always confident of my ability to at least get the job done. It wasn't until after our 19 month old son was diagnosed with autism that I truly began to understand my husband's world. Our son is unpredictable and needs care 24/7 especially when exploring the world. Impulsivity remains a challenge as does his sometimes unpredictable susceptibility to being overwhelmed and melting down with defensive behavior putting himself and others at risk for injury. Things have improved greatly for our son in the past two years but challenges still remain especially as he explores the world more. Because our son needs me to be hyper vigilant, I, too, spend my life waiting for that other shoe to drop or that door to close. Since our son began attending Chrysalis Academy 5 years ago I stopped waiting for the other shoe while he is in school unless the cell phone rings and the caller id says "Chrysalis Academy." It happened to me yesterday while I was in a meeting. Luckily the call was about a cancelled after school session not a problem with our son. However, until I walked out into the hall and returned the call, I felt myself dreading that other shoe. There are few places besides home, school and the homes of friends from the autism community who understand our challenges where we feel truly welcomed. When out in the rest of the world we don't take anything for granted because we know we could be a melt down away from a slammed door. This spring our family joined SpoFit, a fitness center especially for those with disabilities and their families. The staff and other members have been amazingly welcoming, tolerant and accommodating. However, you just never know. Last Tuesday our son was in the men's locker room with his father changing after swimming. Unbeknownst to me, my husband had been letting our son roam the men's locker room as long as he was dressed and within hearing distance. This time as his father was naked, our son left the locker room and decided to climb the SpoFit Rockwall two and a half stories to the top without a safety harness or someone belaying him. I was afraid that the SpoFit staff would decide that the liability was just too great and ask us not to return. Instead, the other shoe didn't drop and the door remains wide open. The staff recognized it was a misjudgment by a usually vigilant parent and offered to work with us to make sure that our son continues to grow while safely enjoying SpoFit. So, now we're all working on it!

What a Father Does

In September my husband and I will celebrate our 14th anniversary. Our life certainly doesn't look anything like the life we imagined and planned during our engagement, but whose does? Together we've faced our share of challenges and through it all he is my rock. While we disagree on politics (I married a conservative Republican 4th Degree Knight of Columbus Catholic although I have corrupted him a bit), we do agree on the most important thing. No matter what, our family comes first. When it was just the two of us he took chances with his career several times while I waited to restart my career as we first tried to have children. Circumstances changed (he was laid off and his preferred career path was outsourced to India, we have a child who has special needs) so for the past decade he has been in a job that he enjoys but isn't his dream job and my career has yet to restart as I am too busy taking care of our son. Neither of us regrets the choices we've made because we made them together based upon what was best for our family. Neither of us thinks that we've made "sacrifices." As our circumstances change we'll continue to re-evaluate the opportunities before us first always trying to do what is best for our family as we've done throughout our marriage. This weekend we heard about a father who put his own safety first and abandoned his children in a life threatening situation. My husband was very clear that he would put our son under a seat, wrap me around our son and then throw himself over me praying that any bullet wouldn't penetrate all of us. I'm not surprised by my husband's reaction and I have no doubt that he will do so instinctively if ever we find ourselves in such a nightmare. It's one of the many reasons I fell in love with him despite our differences. The past few months I've watched the media coverage of the Sandusky and Lynn trials. While I never did criminal defense work, I spent a decade doing Family Court defense work and represented more than my share of child abusers. Each of my clients got the best representation of which I was capable; especially those who morally repulsed me. I tried harder in those cases to ensure that my personal feelings didn't compromise my professional efforts. Those cases were the most challenging for me but I was able to sleep at night knowing that I fulfilled my professional oath while praying that the system worked as it was designed. When that was no longer true I moved on. In my old neighborhood sometimes street justice was discovered in the Dyke Road Ditch. It is the marshland between the Mohawk River and the Barge Canal that can be seen from the Dyke Road overpass above. In the past it was common after the spring thaw (in the Mohawk Valley the snow usually begins around Halloween and the grass is once again visible around Easter) to find a dead body or two in the Dyke Road Ditch. While I certainly don't embrace street justice, I am appalled that institutions like the Catholic Church and Penn State not only condoned such horrific child abuse but actively conspired to cover it up rather than first doing their best to protect those entrusted to their care and when they failed in that duty, seeking justice on their behalf. We Catholics call our priests "Father." In my lifetime I have been privileged to know many men who deserve that title. My father's best friend as I was growing up was a Catholic priest who was a Dutch Uncle to us. I have no doubt that just like my husband, he instinctively would have put himself between any innocent victim, especially a child, and danger because that is what a father does. I also have no doubt that he would have called the police if he knew that child abuse had occurred even if the abuser was a fellow priest because he understood that even though he had a duty to the Catholic Church, his higher duty was to be the embodiment of Christ on earth. While I continue to be deeply saddened by the behavior of the Catholic Church Hierarchy, too many of whom still don't understand their priestly vows, I cling to hope that those priests who do understand along with the nuns and the rest of us laity who make up "the Church" eventually will persevere and the institutional Catholic Church will change it's practices and actually follow it's mission to be the embodiment of Christ on earth. In the meantime, my husband and I remain as cautious and vigilant as possible about who we allow near our son as he is unable to protect himself because that's just what mothers and fathers do.

Don't Go 4 Wheeling in a Ford Focus

We did some back road exploring this afternoon in the middle of farm country near our suburban home. We ended up on a literal road to nowhere (it ended with a dirt road left & right). Along the way there we passed through standing water (it looked like it was from an irrigation leak) at one juncture and sand across the road at a wash left from the 4th of July rain. On the way back my husband misjudged the sand on the other side of the road and in a Gomer Pyle moment (Shazam!) we were stuck. It reached 109 today here in the Valley of the Sun. Thanks to the kindness of a stranger passing by who had shovels in the back of his truck (digging out didn't work) and then the farmer with a tractor he summoned, we were on our way after only 2 hours. Luckily we had plenty of gas (the car exhaust was unobstructed so we ran the air) and something to drink. I didn't kill my husband when he misjudged the sand & got stuck. I was frustrated but kept my cool when my cell phone had poor reception. That made calling AAA challenging although my husband finally got through while waiting for the farmer to arrive with his tractor. I even restrained myself from killing him when after all of that, my husband reached in his pocket and pulled out his work issued cell phone (plenty of bars) that he forgot was there. Fifteen minutes later the farmer came with his tractor and we were able to cancel AAA. We had to remain calm because our son was with us. He picks up on the emotions of those around him and easily overloads. I am proud to say that our son did not meltdown at all, not even when his father helped him pee outside in the hot sand. This is the second car emergency our son has dealt with in the past week. Last Sunday morning he and the woman who works with him were at the park in our housing development half a mile from the house and my car battery died (another AAA call as it is their warranted battery). When I didn't answer my cell phone (it needed to be charged) nor did my husband (his was dead too), they walked home. My son didn't meltdown then either. He has come so far in the past few years! I'm still thinking about killing my husband after my son goes to sleep, but I'll probably be over it by then. In a few months we'll be married 14 years. With him life is a series of little misadventures. I should be used to it by now. We make a pretty good team though. I'm the one who spotted the kind stranger driving by and my husband flagged him down. I'm the one who reminded him we pay AAA annually and he walked around until he could get a call out. When we got home we took a refreshing dip in our pool (another of his misadventures spanning a month of weekends to set up a "portable" above ground pool in a box) and everything looked much better. Tomorrow we'll laugh about our attempt at 4 wheeling in our Ford Focus and maybe we'll even choose another back road to explore.

I Have a Big Chest

A month ago I had a health scare. My blood pressure spiked while my husband was hospitalized with diverticulitis and then underwent a cardiac catherization (it was negative, he is fine). My EKG showed abnormal waves that could mean at some time in the past I had a heart attack or, according to my cardiologist (the same one who 2 years ago placed a stent in my asymptomatic husband's heart 2 cm from what they commonly call the "widow maker" to open a 99% blockage before he had one of those silent, but deadly heart attacks), it could just mean that I have a big chest. Wednesday I had an echocardiogram and a stress test. Besides being overweight and out of shape, my heart is working well. No previous heart attack (BTW, that I don't remember having), no cardiac damage of any kind. Great blood flow. Obviously I just have a large chest! However, it is a wake up call to change my life style and take care of myself. I don't need to be hit over the head again. So, since getting cleared last Wednesday by the cardiologist to exercise with no restrictions (this was a week before the echocardiogram & stress test), I've been using the SpoFit treadmill and treading water while my son is in school. I can no longer afford not to exercise and change my diet. I didn't like the alternatives especially now that my son has turned a corner. We all worked way too hard for me not to be around to enjoy the good stuff and celebrate my son's hard earned progress. I've given up my Focus office for the SpoFit and they have wifi! What more could I ask? ;)

Welcome to Holland

The new staffers at my son's school think he is among their easiest students. They have no idea about his challenges of even a few years ago. What finally made the difference for my son came at our darkest hour totally by accident. For 6 years he suffered from excruciating headaches so painful he tried to bang his head through our floors (here in AZ ground floors sit atop a concrete slab). He was in so much pain and we were so desperate after running out of specialists with whom to consult that we admitted him to the locked Biobehavior Unit at Phoenix Children's Hospital. Because the admitting psychiatrist preferred one medication over another (like I prefer Coke to Pepsi) he changed them out and for my son that has made all the difference. Even afterward the doctors were skeptical but you can't argue with the results. My son's psychiatrist told me during our last visit that since the medication change for my son, he has treated several other children with the same medication reaction now that he is aware of the possibility. Last year the psychiatrist added a new medication that also is making a major difference for my son. Suddenly my son's future is filled with many new possibilities as he continues to make progress. Amazing what you can learn when you aren't in so much pain that you put your head through the wall seeking relief to no avail. Many are familiar with the poem Welcome to Holland by Emily Perl Kingsley (http://www.lovethatmax.com/2011/03/interview-with-author-of-welcome-to.html) in which she analogizes raising a child with special needs to taking a trip to Holland when you expected to be taking a trip to Italy. Welcome to Beruit by Susan F. Rzucidlo (http://www.bbbautism.com/beginners_beirut.htm) is the corollary written by a parent raising a child with autism. I've never visited Holland or Beriut, but Italy is my second favorite country (after the USA). My husband and I spent 10 glorious days exploring Rome, Pisa, Florence and Venice during the 6 months we lived in Germany when we were first married. Midnight Mass at St. Peter's was a bucket list item along with meeting Justice Sandra Day O'Connor (food for thought for another blog entry). We hoped when our children were middle school age (that would be now) we'd find a way to score a 3 year corporate assignment in Europe, preferably Italy. Alas that opportunity is not to be... Instead we are in the AZ desert (my least favorite place) for the foreseeable future. In the past decade, without meaning to (we were too focused on daily survival to even notice), we've built a wonderful life and a home for ourselves in this God forsaken desert. We belong. We have friends who are our extended family. We celebrate holidays with them. We laugh, cry and kvetch together. They worry about us and we worry about them. Our son is surrounded by a loving community of friends who watch out for him. I may not like the desert and it certainly isn't Italy but I love our life here. Home is where your heart is and no matter what your head may say, you need to just have faith and follow your heart.

Why Not Us?

My husband's employer sent an email to all 3,500 employees this afternoon informing them that within the last 24 hours someone left two flashlights near businesses that exploded when innocent people picked them up and turned them on. My husband has never received a similar email during the 9+ years he has worked at the hospital. The Feds are on it and obviously we're all praying that they catch whomever is doing this before someone is seriously hurt. The first 6 months of our marriage we lived outside Nuremberg in Bavaria, Germany. My lasting memory of landing in Frankfort is of guards armed with Uzis patrolling on a catwalk above us. The only place I had ever seen patrolling armed guards before was at a US Military base or when crossing the border into Canada. However, their weapons always were in plain sight but holstered. During our German classes we were taught how to tone down our "Americanness." We were instructed to speak more quietly (Americans are loud and boisterous) and how to hold a knife and fork like Europeans so we couldn't be singled out as easily. The Germans understood that they had roughly the same chance of being a victim of terrorism violence as they had of being hit by a car while crossing the street. It was just a fact of life. When the planes crashed into the Twin Towers on 9/11 my husband and I were shocked, but not totally. We knew it was only a matter of time before, like the Germans and other Europeans, we Americans learned that we, too, have roughly the same chance of being a victim of terrorism violence as we have of being hit by a car while crossing the street. It is just a fact of life. This morning while working out at SpoFit (I'm not one of those zone people while exercising) I met a man who tripped over his wife's power wheelchair, never felt any pain from the injury and 6 operations later had to have his leg amputated. It is just a fact of life. Rather than bemoan his fate he was working out in the pool while innocently bantering with the Aquatics Director who easily is young enough to be his granddaughter and was flattered by his attention.

Build It And They Will Come

Last night during evening rush hour we had a dust storm followed by rain complete with high winds. Every Wednesday our routine for the past few months has been to pick up my husband at work (the hospital is half way between home and my son's school so we commute together) then go to the SpoFit (http:\\www.spofit.org) where my son climbs the Rockwall. The weather delayed our plans and cancelled our time in the SpoFit pool but as soon as the storm broke we jumped on the freeway and headed out. SpoFit has a Kids Corner program where the staff plays organized games with the kids. Last night it was just my son zooming around on a gym scooter and trying his best to shoot hoops along with my husband. We now are adding Kids Corner on Tuesdays, Wednesdays and Thursday's to our routine. Swim lessons begin in a few weeks and over break my son will be attending 3 weeks of summer camp for a few hours on Mondays, Wednesdays and Fridays. Afterward we'll swim. SpoFit is the best kept secret in town. It was built with money from City of Phoenix municipal bonds and is for people with disabilities and their families. A family membership only costs us $60 per month. Like everything else it is a drive, but watching my son and his father on those gym scooters last night was well worth the 40 minute drive even during a storm. While we love having the facility all to ourselves, I am amazed it isn't crowded. Enjoying the local Y a few miles from our house isn't an option right now but we hope after spending time at SpoFit it will become one. Integration as much as possible always is our goal. I had brunch with some of the moms from my son's school today. Word of SpoFit is beginning to circulate among the autism community. It will be fun watching it go viral. We like that our son meets people with different challenges and that it reminds us we are part of the larger disability community not just autism land. We're going to continue enjoying having the facility to ourselves for now because very soon it will be humming.