Posts Filed Under Ramblings

Who Decides Our Children’s Worth?

posted by Momo Fali on March 25, 2014

This is long. It’s been a year in the writing, so please bear with me.

Before my son started elementary school in 2007, I met with the principal of the school we hoped he would attend; a small, private, Catholic school where his older sister was a successful student and where we knew almost every family and child. And, therefore, they knew us and our challenges.

We couldn’t think of a better place for our son. We knew that the Christian values, their stance on bullying, the backing of our priest, and the supportive community was just what any special needs child deserves. Here was a kid who had barely survived his first few years, who didn’t speak until he was four, who had to be spoon-fed by me until he started kindergarten; we knew he needed to be in a place where kindness and compassion were paramount.

So I helped the school form a fundraising committee so kids like mine could attend. It was to pay for tools, aides, education and anything else these children needed. I stood up in front of our entire parish and asked for money and they gave it. Lots of it. Now, I feel like a fraud. I am so sorry.

There were times over his five years there that were really good and there were teachers who understood him completely. The students were great with my son and the other parents were just what we’d always hoped for; supportive, happy to educate their children, and never shunning us. Not once.

But, somehow, last year everything fell apart. He was sent home nearly every day for behavioral reasons, he was made to sit out of the Mardi Gras celebration (a religious holiday, no less), and he wasn’t allowed to go on a field trip to the Newport Aquarium even though my husband took a day off work to be his sole chaperone. Never considering that maybe seeing him with his father would give them insight into applying discipline that worked, they simply told us he wasn’t allowed to go.

Here was a child whose life had been full of some pretty awful situations and they didn’t give him the opportunity to be included in fun life experiences. I don’t know if I can ever forget that.

aquarium

I took him to the Newport Aquarium last week while he was on spring break so he could finally have the experience. He behaved perfectly and we had so much fun.

Was my son well-behaved? No. Was he disruptive? Yes. He has autism. He made strange noises in the classroom, he had to be given some tests orally because he got anxious otherwise, he tore library stickers off of books, wouldn’t tuck in his uniform shirt (GASP), he cut up papers, didn’t do his homework and when the teachers would look for his papers they would find them in the recycling bin. Sometimes he talked back or wouldn’t talk at all.

BUT, he was also learning and he had friends who played with him at recess. He was involved in sports and went to sleepovers. He had the kindness and compassion that we were hoping for, just not from some of his teachers.

These are excerpts from a letter that one of them (not even HIS teacher, but another one in the building) wrote about him:

“…I gathered he did a number of things that…were belligerent attempts to gain attention…”

“I made several statements to him, ending with ‘do you understand?’ He refused to answer. I told him to say Yes or No. He refused to answer. I suggested maybe he return to kindergarten if he does not understand opposites.”

“Based on my interactions with him today (and in the past) as well as the challenges faced by many adults in the building, as a result of his behaviors, today alone, any outside observer might wonder why we have decided that (we) can manage this child’s needs. He does not have respect for authority, or a proper concern for acceptable social behavior.”

“I’m not sure he thinks in the long term, anyway. I do believe that (he) fails to see a bigger picture for his own future, but instead travels through each day based on his own assessment of one interaction after another. His decisions are impromptu, so to speak, and the very idea of building up rapport with peers and adults, of long term maintenance of good behavior, are not part of his thoughts.”

Would you leave your child in a building with someone who thought of him like that? Does that sound like someone who had been educated on dealing with autistic children? There was much, much more to the letter. Three full pages of it, in fact. Him not being allowed to go on the field trip was the deciding factor in us pulling him from the school – this letter that we received a few weeks later, was proof that we made the right decision.

But now he is in a school with no typical peers. He is hit, cussed at and screamed at by other students every single day. Yesterday, he came home in tears and said he doesn’t want to go back. Where do we go from here?

And, suddenly I’m wondering if removing the kids from these situations is the only solution. Maybe we need to remove the teachers. Certainly, if a classroom of 10 year olds can show compassion to a child with autism, an adult should be able to. Right? Especially a person who is trusted with the lives and education of our kids.

Maybe we need to take a deeper look at bullying by teachers, at special needs education and how we integrate children into typical classrooms. Maybe when a teacher wants to just give up on A CHILD (whether a 10 year old, medically fragile child with autism or a typical one), we should evaluate the situation to see if the child has more worth than that.

I’m pretty sure that every, single time we’re going to think the child does.

What’s Your Talent?

posted by Momo Fali on March 13, 2014

My son has a talent show at his school next month. While his performance is not my decision, I’ll probably be the one making the choice. First of all, because he can’t decide between, oh – pretty much anything - and secondly, because I’m controlling.

I am deeply torn between him yodeling, doing his Gollum imitation, or conducting the theme from Star Wars. He does them all equally well, so there’s no determining it by level of talent. No matter what, I think we can all recognize he will win at being geeky; which is to say he can not lose.

The last time he was in a talent show was in preschool where he dressed in a tuxedo and danced with his sister. That was back when she still liked him.

shut up with the cuteness!

When my daughter attended that same preschool she got up and sang “God Bless America” which was pretty much the most adorable thing you’ve ever seen. It was shortly after 9/11 and she brought the house to tears. She’s a freshman in high school now and recently juggled for her class. She could have also played the piano, or sang, sketched a picture, or solved some massive algebra problem. Lower the bar for people like your mother, kid!

I don’t know what I would have done if I had been in a talent show as a child. I would’ve been like, “Everybody needs to go outside so you can watch me climb a tree.” Oh, wait there was that time I performed for our neighbors by singing “Elvira” on the back of a sawhorse.

I thought I was a great singer, especially when I used to close myself in our half bathroom with my tape recorder and belt out Barbra Streisand’s “Evergreen” like I knew love was as soft as an easy chair. I didn’t really know anything about love, or how to sing, and I still don’t really know what an easy chair is. I had an aunt nicknamed, “Easy” but I don’t think it had anything to do with a chair.

Anyway, I’m stumped. I may just need your assistance in deciding. In the meantime, tell me, what’s YOUR talent?

I have had chronic bronchitis – according to my mother – pretty much all of my life. Of course, I don’t remember coughing so hard as a baby that my mom gave me whiskey to try to soothe me. Though, that probably explains my current love of a good dive bar.

I do remember having this hacking cough as a kid. I remember codeine syrup that made me vomit, being sent to the hallway at school, and eventually just being sent home because I was disrupting the class. I was absent 45 days one year.

I remember weekly allergy shots that did nothing, my mom putting me on mega-doses of vitamin C (which did help the cough a little, but it also meant mega-hours of sitting on the toilet…you’re welcome), and I remember hovering at the kitchen table with a towel over my head while I breathed in a steamy concoction of rosemary, sage and thyme. I should have thrown in parsley for good measure. Simon and Garfunkel are so disappointed in me.

photo(42)

As an adult, I do a lot of visiting my pulmonologist, ingesting steroids in the form of pills and inhalers, struggling through workouts, and complaining about Ohio winters. Damp, cold weather makes the condition worse and if it doesn’t rain or snow today, it will be the first FIVE-day period here without measurable precipitation since October. I hate winter with a passion because of the cold, but mostly because I feel miserable for months.

And, I hear a lot of, “You’re sick? AGAIN?” which makes me feel a lot like that little kid who got sent to the hallway. You don’t get, “How are you doing?” because you’re always doing the same. I’m always coughing. I’m always tired and when it gets to be March and I get another flare-up, I’m really depressed. I cried after watching “Parenthood” last night; not because of the aspergers or divorce storylines, but because the characters were all so happy and healthy. Jerks.

My mom still worries about me non-stop and my son told me yesterday, “I’m going to pray really hard for you” but I can’t help but feel like one of these days I’m just going to lose it, pack up the car, and force my family to move to Arizona.

Because, even though peri-menopause and desert heat don’t mix, I’m getting really, really tired of sitting in the hall.

I’ve Got 99 Problems, but this Blog Ain’t One

posted by Momo Fali on February 25, 2014

I didn’t think I’d ever write again.

I’m not trying to be dramatic; if so, I would admit this with a slumped neck and the back of my hand held to my forehead. If you’re not dramatic like a southern belle, well you’re just not dramatic at all.

No, there’s no drama in the statement that I didn’t think I’d ever write again. It was just a matter of fact; a brick wall into which I ran. Actually, I just kind of walked into it and there I gazed into the mortar every day, trying to move my feet forward while facing that brick wall. I took steps, but I didn’t go anywhere.

brick wall

What bothered me, was that this didn’t bother me. I was okay with being in this place, because I didn’t really have any other choice. There was this ho-hum acceptance of where I was over the last couple of months. Ho-hum, brick wall, la dee dah.

So what were the things that kept me from writing? If I had to guess I’d say first and foremost, winter. If I could weave you any tale with grandeur, it would be my disdain for winter. It would sound very Shakespearean and involve a lot of “doths,” like, “Back off winter, I am doth DONE with you.”

Because of my husband’s schedule, I spent a lot of January in a bad place; a lonely, dark, FREEZING COLD place. Hi, honey! Love you! It was so bad that I actually looked at homes for sale in L.A. Mmm hmm, Los Angeles, people. I needed real people to talk to and I didn’t care if they were complete strangers and mostly said, “Dude.”

But, February meant my husband was home more often and it means that March is coming soon and thank goodness it’s a short month! *said with slumped neck and back of hand to forehead*

There was also the death of Philip Seymour Hoffman. No, I didn’t know him. I didn’t even know his name was spelled with one ‘l’ until he died, but when he passed it felt like someone came up behind me at the brick wall, picked me up and threw me into it.

I know people who have died from heroin overdoses. I know people who are in jail because of heroin. It’s personal. And, here was this guy with nearly-limitless resources, talent, assistants, managers, and no doubt housekeepers and a nanny, who could not keep this demon at bay. That scares me.

What about the people who are struggling to just keep their jobs and houses out of foreclosure, and take care of the kids, who might have the urge to take away some of the stress and pain? How do we stop them from using heroin to take them to a place that makes them feel better? How do we stop them from trying it the first time? How do we make sure our kids don’t try something the FIRST TIME? I still don’t know the answer to that. Damn it.

And there was Dylan Farrow (I will not type his name here), the terror threats in Sochi, and so much unbelievable news that I just couldn’t be that One. More. Voice. on the Internet.

But then something snapped, and by snapped I mean it was like a twig soaked in water, then bent back and forth until the bark came off. Then I twisted the wet, woody fibers underneath and gnawed on them a little. It was like that kind of snap. All of a sudden, or not suddenly at all, I wanted to write again.

And, I can’t really tell you why. Maybe it was my med changes, spring on the horizon, tougher workouts, completion of some work projects, more time with friends…I don’t know and it doesn’t matter. All I know is that I turned my back on that brick wall and I was writing.

I don’t know which direction I’m heading, but damn it feels really good to be moving again.