When Your Tired and You Know it Snap Your Fingers??

He's been crying for 45 minutes, straight. This is the point in the day when Momma starts to get a little wiggy. DD (dear daughter) is whining for everything under the sun, Zach is tired and not liking the demands placed on him by the speech therapist, Momma went to bed late last night - so we basically have a house full of cranky people right now all trying to coexist. How do you think that works? Not real well.

We have discovered that Zach can indeed meltdown. He has had little tantrums in the past - I would say nothing more unusual than another typical child his age, with the exception of he cannot tell me specifically what has his goat. Then came Friday the 10th. And that afternoon we had 1 hours and 25 minutes of straight crying - big tears, sobs, so loud, especially for my little man, and he would throw himself into the couch (you know the big billowy stuffed one that he spread peanut butter over a few times these last few months) face first so that his sobs would be muffled. I swear he was trying to spare us from his agony. I am afraid it didn't work as the next 20 hours were spent with him miserable - although the crying did eventually cease.

At times like this it is difficult to write those fluffy little posts that, although real, don't permeate quite as deeply into the crevices of what are life can be like at times. Exhaustion. Fear. Sorrow. All mixed together. And unlike so many other things that cause those feelings, there is no cliche that applies to help get us through.

The cliches I grew up with are likely different than the ones you did - I think each person clings to a set of them that combined become a mantra for living. Maybe it is a great philosopher who goes deep into places you wish you could - sure they might appear scholarly, after all academia thinks so. Personally, I think a lot of them did a little too much me time and not enough hard living.

Some cliches run in families. People seem to like to recite what was once told to them. This is true in my family and my husband's. In my family a few come to mind at the moment: "Little children, little problems. Big children, big problems." Nope. Doesn't apply here - autism changed that. My personal favorite: "This too shall pass." What a crock. Autism certainly blows this one outta the water. Ask any caring parent to an ASD child their biggest problem - the fear of what will happen to their child once they are gone - time does not take care of this issue. Time exacerbates it. While some people are not as profoundly affected as others, for those of us who are looking at a lifetime of autism that will require support, we get scared. I've seen the injustice of Zach not receiving the services and care that have been contractually stipulated for him and I am a fairly strong advocate. What the heck is gonna happen when I am not here?

So amongst the flow of muddy waters we are now treading - Zach has acquired a new stim - he has begun to snap his fingers. On his own. Not having ever been shown how to. A skill, I might add, that is usually developed between the ages of 6 and 8. *sigh*

He is reading a few words now although getting him to learn the Dolch sight words (the, and, I, me, my, him, make, etc.) the school will be working on is of little interest to him, and thus, is not something he is picking up on quickly.

Going off to sleep now. The cries have subsided for now. Time to make hay...

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.

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

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.

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.

It's Not All Bad: Request for Donations

CLICK THE RED HOUSE TO DONATE TO FEAT OF CNY!!! THANKS!!!

If you are still reading this blog, after all the rants, raves, and frankness, then you likely don't hate me or find me totally annoying. There is the odd chance that you do hate me and read because of a delight you take in my struggles, which would likely make you diagnosable in some taxonomy or another of the DSM. I'm kind of banking on the fact that most of my readers are rooting for us and not looking forward to our demise.

I often wonder how many people in my life are trying to help versus who are just doing the base minimum in order to state that they are helping. I am pretty tough on my family. Yup, I know. If you haven't figure out this by now about me, my expectations are, well, a little on the demanding side. I become downright argumentative/judgmental when my requests/demands are not met to my liking. And that happens a lot.

I try to keep in mind that they likely don't mean to hurt me. But I guess that when I tell them they are doing as much, and they refuse to accept any responsibility in their actions of making me feel that way, well, I become disgruntled. But there are several occurrences where they brought me joy - and I am not sure if I ever relayed that.

Now as much as I complain about my kinfolk, I do love them. And they aren't all out evil. In fact, sometimes they can be quite charming and even amaze me with their kindness. Recently, Zach's godparents began watching Sophia and Zach on Saturday mornings so that Steve and I could participate in training runs.

Steve and I will be running in the 33rd Annual Syracuse Mountain Goat 10 mile Run on May 1st. We have been training for the run and are running it in dedication to those affected by autism. We are asking those who want to support us to make a donation to Families for Effective Autism Treatment a local non-profit group that provides resources and support for many families affected by autism. Please consider donating to this terrific organization - they accept credit card donations - and let them know it is for the Mountain Goat run.

Anyh0w - the training runs have been on Saturday mornings at 8 am downtown in Syracuse. That meant having a sitter at our house at 7:30 am in the morning on their day off from work. And Cathy and Mark, without my asking, volunteered their time to us. It has meant the world to me and has made a difference in my disposition, because this is exactly the type of support we need. 1) I was able to get time with my husband doing an activity we both enjoy. 2) I was doing something healthy for myself. 3) I was getting out of the house that I feel so chained to otherwise, and 4) I was getting a break from the kids!!!


Aunt Cathy and Uncle Mark also had us over for dinner during Passover. It was so pleasant.

As for the rest of life: Zach's base paraprofessional (therapist) has left and we are once again scrambling. I have found partial replacements but there always seems to be issues of one sort or another. I have yet to receive the old data from a previous teacher which may create a problem if we don't get it soon because in order to qualify Zach for summer services, we need to show regression of skills from periods when Zach did not receive therapy (vacations, breaks, etc.) . If we don't have the data that may pose a problem. We attempted neurofeedback with Zach last week. The session was a struggle, and I noticed absoultely no changes in Zach, so we may revisit, but for now, I think we will be passing. Zach starts play therapy this week a to the tune of $60 a shot. Yikes! He would have been working with this therapist for free had I not been dimwitted enough to pull him from his preschool program. *sigh*

Sophie's test results are in from school. She is fantastically average according to the tests. According to observers in her classroom, she has some issues. So what does it mean if you test well, but in the academic environment, you have struggles? We'll find out - Sophie's meeting with the school district special education department (CSE) is May 10th. The fun just never seems to end!

So please do consider making a donation to the great organization I cited above - any amount is appreciated! They have done a lot for our family and others. How many times can you give money to a charity and absolutely know it is being used wisely? I can assure you, this is one of those times.

And as for Tuesday April 19th... Camelot

17 children. I think. I don't know. And there were many of them on the spectrum. How many? I don't know. All I do know is there were a crowd of people at my house. There was confusion. There was pizza sauce on my walls and good couch. There was happiness. There was even a striptease. And I loved it.

It brought me back to Sunday dinners at my mother's house. It thought back to the holidays of total chaos that I adored. I am the youngest of 4. My siblings all basically had children at approximately the same time - my one sister through foster parenting and eventual adoption of my beautiful niece. I was a kid during this time.

But I loved the fact that amongst the chaos, one Christmas the torn wrapping paper in my mother's living room must have measured 2 feet high and one of the kids was walking around with a bottle of scotch meant for someone else. There was laughter. There was such joy.

Family gatherings haven't been quite the same for us. We have the only young children in the family right now. And then, Zach doesn't quite put on the show like expected. I feel that we let others down; they go out and get these presents that we have to entice Zach to open. He doesn't show the reaction and gratitude of his sister. It took us so long to get him to understand to take the paper off. Now, he just rips with abandon,sees the surprise and tries to figure out what it is and what function it serves.

But then there was this past Christmas 2010. He finally showed interest in opening up his own presents. I cannot tell you how stinking excited I was. It's one of those things you just take for granted if you don't have a special needs child. And then it happened. I was pulled into a bathroom - pulled away from watching one of my son's precious moments. I was told a story of abuse and pain. My son's moment continued, and I wasn't there to watch. Cousins and aunts and uncles were there, but they didn't understand the significance. I only have so many of these moments, and someone selfishly took that away from me. Yes, this person was in pain. No, I didn't cause it. Why did they have to choose that moment to tell me? Why couldn't I just have that one freaking moment of joy in my life. All our joys are so hard fought for. Why does everyone continue to expect me to solve their problems? Can they not see we have ones of our own, ones that I cannot handle?

That's family and autism. You can watch me as much as you want. You can even say you love me. You can watch Zach. You can read my words. But, my heart is only understood by a few others out there. This is a case where blood being thicker than water does not apply.

It's so hard when I see a newly diagnosed parent going through this. It breaks my heart, it hits so close. It makes me relive that place all over again. I had some friends over the house today with kids the same age as mine, but neurotypical. They are so flippant about things involving their kids and what we are up against. I realize there is just no way to describe the heart of a mother when faced with things like which preschool to choose for your nonverbal child. You just have to live through it to understand the pain, the torment, the guilt, the fear. It's so freaking unfair. I feel so connected to all my fellow ASD mothers that barely know me because no one else will ever understand, it just isn't possible. Just us. Connected by that weight on your chest that never seems to go away, that nightmare that you never wake up from but get used to facing.

Part of that nightmare is that of the ever-disappearing family. (I stole that from a facebook friend.) I was always so proud of my family. I knew we weren't the Waltons, but I really felt like I was dealt the best hand possible. I had two parents who loved each other, siblings with nice spouses and beautiful children. We got together at holidays, on Sunday's at my moms, for birthdays, and sometimes just to get together. I always felt like if I really needed them they would be there for me. The fact is, I was fiercely independent and really didn't need them much for many years.

And then there was diagnosis. These past few years my life has felt like a round of musical chairs, where I thought I had the last one, and it was pulled out right from underneath me. The thing I always valued so much in my life felt like it was an illusion. I could see them, hear them but when I went to reach out to touch them, I reached right through them. I cannot ever begin to tell anyone how hurt I have been over this. And I am sure my family would tell you how much I suck if you were to ask them, and they would probably be right. I do suck. In so many ways I cannot begin to count. In so many ways I never knew, until I had this little life that depended on me for so much and I began to fail him.

So where are they for him? Hate me, turn your back on me, but my kid? I just will never understand that. Why won't they spend time with him? Visit him? What about Sophie?

Let me say that Zach's grandmas are top notch. If there were ever two women who loved their grandson - it is them. And for that I am so happy. But those days of family get-togethers, with laughing and games and sharing, yeah, my kids won't be having much of that with my family. They can say it is because they don't have kids my own age, and that is probably right. But I was a single teenager, twenty something year old, without any children, and I made a point to spend time with all their children.

There were movies, museum visits, camping trips, the zoo and endless sleepovers. I don't think they remember. I think it must not have meant to them what it meant to me. I love my nieces and nephews almost as fiercely as my own kids. I miss them. No one wants to visit hysteric Aunt Leanne. I guess I probably wouldn't want to either. But my mother and father didn't raise me that way. You visited whether you liked it or not. Family was family and we supported one another. I think about the hospital visits, or the nursing home visits, cleaning at great Aunt's house who could no longer do it herself, the endless birthday parties, car rides that took forever to the south to visit people I felt I didn't even know but I was told were my family. Kiss them, hug them. This is your blood.

I am not angry with my family. Anymore that is. Maybe that is part of this acceptance thing I keep on hearing about. But the facts still remain the facts. And my wants and desires still remain too.

So I had a surrogate family over. With their own weird kids like mine. Ones that wanted to be around me and my kids. They appreciated my offerings, tolerated my personality, asked me how I was doing and what they could do to help. Little did they realize that by trashing my house and then helping to clean it up, they gave me just the medicine I needed; the gift of their time, the gift of their presence. For one brief moment, I wasn't alone in our journey. Camelot?