Monday, May 16, 2011

ORANGE Alert




Today's alert level is ORANGE. While no injuries were sustained, capital damage has been determined. According to the maternal authority (MA): rice had been tracked throughout carpeted family room while she took a phone communication from a team member. While MA cleaned said rice catastrophe, chocolate peanut butter was then smeared onto family room couch.

Suspect is said to be adorable short male, 3' 8", blond, blue eyes, with enchanting smile. Accomplices are said to be suspect's OT and PT who helped to provide the suspect with skills to open doors (refrigerator) and jars (peanut butter) and are being sought for questioning. According to expert profilers, the suspect will likely strike again within the same environment. MA, although sustaining no permanent injuries, should be monitored for requiring stress relief.

Currently, MA will require 2 glasses of a grape fermented beverage this evening. Please all be on alert for possible future instances. MA will need to be monitored for how much support and shoulders to cry on she will need.

Some days are just too much to handle straight.

Wednesday, May 11, 2011

Today's Snowflake: Ben

Today's snowflake is a bit unusual. This was not a submission by a parent, but rather a video I found after learning a bit about this fellow from an agency that provides support, Onondaga Community Living.

This family is awesome in how they have come together to support this wonderful man. He is even a businessman! He has a website where he sells his furniture. Go check it out!

My favorite line from this video clip comes from his aid:
"...the greatest gift of all is the relationship, being present."


The power of appropriate support is amazing! Way to go Ben!

BEN from Mahala Gaylord on Vimeo.



Ben Lehr

Ben even has a web site. Yes - he has his own business! I am so excited by this that I have to share with others - check out their website.

http://benlehrfurniture.com/default.aspx

Wednesday, May 4, 2011

She finally asked

Sophia, without being asked or even commanded to, made her bed the last few days. This warranted a trip to Michael's, avec coupon for 40% off, where we would graciously award her the Squinkies set of her choice. Those of you who personally know Sophia know that small things and rubbery textured things are some of her favorite items, for whatever sensory reason why. Small rubbery things intended as toys, aha Squinkies, are just down right irresistible to her.

So off, after dinner, the family went to Michael's. But first Mom and Dad decided to go to Bath Bed and Beyond to pick up a canister of CO2 for our wonderful seltzer maker. Have you seen these things? I got one for my birthday from my awesome SIL Cindy and MIL. Terribly cool - we use it all the time!

Sophia has known for sometime that Zach has autism. She even understands some of the details - or symptoms of autism. But that doesn't mean she gets it. Nor do I for that matter. After our purchase at Bed Bath and Beyond we were off to Michael's. On our way out the door, Sophia said "Hey Mom - it's not that far away - can we walk to Michael's?" I was struck that she wasn't being lazy and preferred to walk. The boys went off by car and Sophia and I went off by foot.

Was this a purposed move to get me alone? I am not sure. But it wasn't going to stay innocent for long. Here is the conversation that immediately followed and, frankly, left me, of all people, speechless:

Sophia: "Mom, is autism a bad thing?"
me: "ummmm"
Sophia: "All those people at our house all the time. Are we trying to train the autism out of Zach?"
me: "uhhhh"

The only thing I managed to stammer out was that Zach was different, and that I loved him, autism or not, that being different does not make him less of a person nor less lovable.

But it left me with a distaste in my mouth. I felt that all this time, I had forgotten some basic fundamentals behind all this. At first, I was trying to beat autism - there was that time window that we were trying to beat. We are slowly about to exit that window now - and no where near where I had hoped. He still is not talking, he still has little understanding of what I am saying, he is more and more obviously different than his peers as time goes on.

These questions Sophie asked, simple as they may be, with obvious good choices in how I could have answered them, were left unanswered. This wasn't about sounding good. I can speak eloquently about these things. But I am tired of facades. I need this to be real, true. I wasn't going to lie to her about such a profound and important concept, that in all honesty, I need to answer for myself.

What am I fighting for? What is the goal here? What are we trying to achieve? What do the therapists, teachers, all the practitioners involved think is happening here? Are they just working for a paycheck like I did all those years as an engineer when I was definitely not working on things I felt passionate about? Is this all a scam? Would he be better left alone to evolve and develop on his own will? What is my role in all this? Is autism bad or is my desire to make him as "normal" as possible the problem?

Sophia's questions, honest and important, and I said nothing meaningful back. I was left numb. And that was not the worst of it.

Monday, May 2, 2011

I am a fireman's daughter

A childhood friend once pointed out that she thought that my family was the quintessential American family growing up, pointing to the fact that I am a fireman's daughter. And I am. I never realized that fact is so meaningful to who I am. But it is.

Daddy was a tall, sometimes intimidating man, with a southern drawl, a decent temper, and a heart as big as they come. And this brawny 6 foot 3 guy drank tea, loved to shop, and teared up when watching the movie "My Girl" with me.

For the most part, my childhood was great. I was mostly unaware of the dangers Daddy faced - and he didn't share them. In retrospect, I realize being awakened at 2 am with a pizza in hand from Park West that he brought after a trip to the bar in the restaurant was likely a bad day that he couldn't talk about. I think now did someone die? Was a child hurt?

In the second grade there was a terrible fire in the city. Chris Kovac (*name changed for privacy's sake) was in my class with me. His dad was in the same fire company as my dad. But one difference, his dad didn't make it home from the fire that day. I think that was one of the last fire calls my father was ever on. I went all through school with Chris occasionally talking to him, but not friends. A glance at him made me realize what I had in this life. I realize now I often felt guilty that my dad was OK and this prevented me from ever truly conversing with Chris.

We didn't have a lot of money. But we did OK. There were some lean times. I came later in life to my folks, so as I got older, finances were more stabilized and things weren't as tough. But still, there was not a lot of money. But enough. I tend to have these compulsions that I realize are brought upon by my upbringing, in particular when it comes to finances. Reuse, reduce, recycle? I didn't need some environmental advertising campaign - it was the way we lived.

I am thankful for being brought up this way. Mom and Dad were children of the depression and WW II - they knew what doing without was like. I never heard them complain about it. They knew how to stretch a dollar; to make cube steak (blek) taste good, do home and car repairs yourself, get the extra job when needed. Throughout most of my life there was Sunday dinner at 1 pm, after morning services at the Catholic Church, where most of the family would gather. An aunt and uncle, some great aunts, a few cousins, knew if they wanted to come over, Sunday was when the gang would all be there. No matter what was going on in life, Sunday dinner seemed a constant.

When it came time for college, Mom and Pops sort of stayed on the sidelines, advising me minimally, and trying to get people they knew to help me make my decisions. I knew money was tight, I had no clue what I was doing, my grades and standardized test scores were pretty good. There were a few scholarships, but tuition costs freaked me out. I didn't even try an Ivy League school, but RPI and RIT actually appeared to drool over me. But the sensibility of a state school could not be denied in my mind, and off I went. I had a hard time adjusting to college life. I got a job and worked through college, trying to pay tuition, books, etc. I took out loans. Pops helped out a lot.

When I got my first job at General Motors - I felt like a rich man. Indeed engineers get paid well but not like the more lucrative professions such as a doctor or lawyer. I didn't know that - I was amazed - my starting salary was close to what my father had retired on just a few years prior. I had heard my Mom talk about a French restaurant in Syracuse frequently. I called up Pascale's and set it up, told her to invite the family (including a few aunts) and dinner was on me. I brought the ladies white roses. I felt like such a big shot. Of course, my family still having their blue collar flair, complained about the portion sizes, the sauces, and I forget what else. Afterward, I swore the next time - Ponderosa.

The second order of business was how to repay my folks for all they did for me. There really was no way to do that financially or otherwise. But Dad had never had a new car before. I called my sister, told her of my plans. Like me, my parents had supported her in her college education and she would be soon be graduating herself. Together, we put a nice size down payment on a teal blue Buick LeSabre. It was probably one of my favorite moments in my life - being able to do that for them. My parents first new car ever.

Steve and I are by no means poor. Without my salary, and with the onslaught of uncovered expenses for Zach, things are tight. But we are so fortunate to have options. I thank God that Mom and Dad gave me the sensibility to not live the high life, but within my means. We do live in what I consider a huge house, but it isn't exactly well decorated, in fact it may look a little sparse. In the dining room sits my great Aunt's dining room set, circa 1945. In the kids bedrooms, a dresser and bookshelves from Steve's childhood, in the guest room, my grandmother's dresser and night table. We did splurge on some bedroom furniture 2 years ago, and some living room and office furniture. But everything is piecemeal.

I kinda laugh that we live in a neighborhood that when I was a child that we would take Sunday drives through to see how "those" people lived. Here we were driving in to our lovely neighborhood just 3 years ago with our 13 year old vehicle up and our minivan that is pretty banged up, but safe, so we leave the bangs. There are a million Honday Odyssey's on the road, and I think it is safe to say, ours will never be stolen. I like to say it has been "customized with anti-aesthetic theft deterrents".

I am a fireman’s daughter. I may have faults, and dirty hands, but I have pride. When asked in grade school what our fathers did for a living - someone would say "lawyer", someone else "banker", someone else "engineer" - and then I would say "fireman" and you know I was the coolest kid that day. I mean how can you compete with red trucks, those heavy uniforms and helmets, and, well, fire? I loved telling people about my dad. Firefighters are brave and strong. They are heroes and everyone knows it.

My dad was my hero, too. And not just because he was a fireman. His heart just couldn't have been any bigger. My cousin once described him as a man who made everyone feel like they were his favorite.

He was not perfect. I remember quite vividly: he would spank. And boy did he. And then he would come back with tears in his eyes and a pack of gum explaining that we had to learn right from wrong. He always emphasized compassion, love, service, Jesus. "Love the sinner but not the sin." He was far from a haughty man. They say women marry men like their fathers and I often wondered how that could be true for me. Steve a PhD intellectual type, bald, glasses, sorta geeky, sarcastic. My father was a high school grad, enlisted Air Force vet, tall, brawny, with a beautiful wave to his hair, and not a hint of sarcasm to him. Humility and sincerity. Probably the most unique traits about both of these men. I see it now.

As I grew older, and the fireman thing didn't impress my peers nearly as much as it did years earlier, my teenage ego kicked in and I was likely not the nicest about my dad. The girls that had the cool clothes, fancy vacations, and ski trips in the winter, had fathers that belonged to that abstract group of professions like engineers and lawyers, that no one really knew what they did, but it seemed to be working well for them financially. I was determined to go into a profession that would put me in the ranks of those who had nice stuff and not just nice intentions.

Fore a brief time, I wore the nice clothes, flew on planes that took me to impressive places, ate out at restaurants that served things on fire on purpose, started doing some hip things. It is amazing that living that life never made me happy alone. All those years of Steve and I working yet living way below our means, I never let the impressions of my parents get away from me. I am grateful for their guidance. But it isn't just finances they taught.

My parents love for their children and their grand children was paramount. Today it breaks my heart as I think of how my father would have loved Zach, without care or worry of his autism. How I need him in my life to tell me what not to worry about and what to work for. I am grateful for the bit piece of humility he passed to me. I am grateful to the heart he gave me that masked by my sarcasm, I know is in the right place. I am grateful to the art of compassion he and my mother made priority when dealing with others, and easily passed down to me and my siblings. I am glad he never let me get "too big for my britches" - and when he saw me acting pretentious, was quick to point out that I was certainly not walking with Christ.

I swear I can hear him laugh at the bizarre things that Zach does - not in a mocking sense, but a sheer enjoyment of Zach as an individual. I can see him being a protective papa if he ever saw someone dare tease Zach - that six foot three fireman presence that he judiciously used to intimidate those with not-so-nice intentions. All with that soft soft center wanting to embrace anyone who was hurt or struggling. It tears me up to know that my children will never know him.

Sophia has been watching the movie "Fireman Sam" over and over(perseveration anyone?) again on Netflix these past days. I cannot help but wonder if my dad's spirit is guiding her in her obsession with this movie.

I miss him. I wish my kids could have met him. I am a fireman's daughter.

Happy Birthday Pops.