After networking and learning at the Erma Bombeck Writer’s Workshop over the weekend, I came home, unpacked, put the business cards I collected into a pile, and started reading one of the three books I brought home. But, before I can really start processing everything, there are some questions lingering on the surface of my brain. I need to ask them before I can dive any deeper.

1. I worked in retail all through high school and college and even spent a couple of years on my feet every day as a lunch lady; so why, outside of pregnancy, do I only get cankles when I’m at a conference? You haven’t seen edema until you’ve seen conference feet.

2. Where is housekeeping when I really need them?

3. Why aren’t there roses and candles on my dinner table? Speaking of dinner, who’s going to make it?

Erma Table

4. After stalking author W. Bruce Cameron for an afternoon, why does this picture of the two of us have to show that I have a nose so large, it casts a shadow on my chin?

WBruceCameron1

5. And, why does attempt #2 look like I have a floating head the size of a pumpkin?

WBruceCameron2

6. Seriously?

WBruceCameron3

7. Where’s my dessert?

8. Why are my pants so tight?

9. Why doesn’t the cashier at Target want my business card?

10. How can I bottle the hilarious, heartfelt stories and laughter from 350 other people, bring it home and drink from it any time?

11. Why hasn’t Phil Donahue called?

How Does Your Peanut Grow?

posted by Momo Fali on April 7, 2014

Roughly one month ago, I took my son for his 11-year check-up with his pediatrician. Yes, he’s almost 12. Don’t judge me.

When the doctor walked into the exam room she smiled, reached out to hug me and in a booming voice asked, “Did you think we’d ever see 11?”

No. No, I didn’t.

What I also didn’t see is that we’d get this far only to to need another specialist just shy of his teen years. After slowly discontinuing to see the gastroenterologist, geneticist, and urologist, and with still-regular appointments with an ENT, opthamologist, orthodontist, and cardiologist, the last thing we ever wanted to do was add another doctor to the mix.

But, my son is what we like to call a “peanut.” He is 48″ tall and weighs 53 pounds. If we were dishonest people, he’d be getting free buffets all over town. Not long ago, a women at a salon tried to play peek-a-boo with him.

In some ways, his small stature is a good thing. It gives technology time to make progress on his necessary heart surgery, I never have to spend money on new clothes because he wears the same thing year after year, and he can still fit in my lap and snuggle up for movie night.

On the other hand, if he hits puberty and hasn’t grown enough, he never will. So after some x-rays and blood work, it has been determined that he needs to see an endocrinologist at the end of the month.

photo(9)

At this point, we only know there will be extensive tests and long conversations and walks on the beach with his cardiologist. He is the one doctor to rule them all. As we have before, we will put our faith in the hands of a medical team who we trust with making life-altering decisions for our little boy. No pressure, fellas.

And, in the end, it’s possible that our peanut will grow into a full-sized legume.

Ouch. Conversations With a 15 Year Old.

posted by Momo Fali on March 27, 2014

One of the best things about having a 15 year old daughter is the way she keeps my ego in check. She’s very much like her autistic brother in the honesty department and between the two of them, I find myself mostly talking to the dog because at least she wags her tail in my direction.

Here are some recent conversations with my daughter:

“Mom, are you wearing eyeshadow?”

“No, why?”

“Because your eyelids are purple.”

*

“What’s for dinner?”

“Pork and rice.””

“Oh. Is it good rice or is it your rice?”

*

“Mom, your car smells like the elephant house at the zoo.”

*

So, there you have it. I’m tired, I’m a lousy cook and my car needs to be cleaned. I won’t even tell you what she thinks of my new shoes.

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.