Posts Filed Under Special Needs

No Resentment

posted by Momo Fali on April 2, 2016

It’s no secret that life has changed a lot around here. Many days are still hard – there’s a lot of anger and resentment, and having a child with special needs who goes through major life trauma isn’t as easy as it sounds. As a matter of fact, it sounds a lot like a screaming cat. In heat. Dying.

But, some days are beautiful. There have been so many new experiences that were possible and yet, not possible, in my former life. I’m specifically referring to an eight year period in which I didn’t travel more than a couple of hundred miles away from home.

I love to travel. I’m sure there are people who would say I didn’t sacrifice enough during 18 years of marriage, but I would beg to differ. I think deep inside I knew what I was missing. Maybe that resentment manifested itself in little ways I wasn’t even aware of. Related: My new relationship mantra is, “No resentment.” There will be no more of that.

In the past 13 months, I have traveled to 11 states. I may have been meant to be a trucker, because my heart is really happy on the road. If I had a CB and an orangutan, I’d be all set. Also, I just made a reference that no one under 42 years old understands.

My latest adventure was on the west coast experiencing the northern California and Nevada I’ve only seen rushing by in taxis on the way to conferences. The best part? I got to take my kids.

This is the picture where I crossed #4 off of my Life List. Stand under a giant sequoia. Check.


Here’s my daughter, on the edge of a cliff at Lands End park. This child of mine, who is almost a woman (GULP) was quite the risk-taker on this trip; literally living on the edge.


What you can’t see in this picture is the mighty Pacific and fields of green so vibrant I was sure we were actually in Ireland. So, here you go…


This is my son sitting inside the roots of a fallen tree in Lake Tahoe.


What you can’t see is the waterfall to the left, or the bluest lake I’ve ever seen, or the snow-capped mountains dotted with fir trees. Oh, wait…THERE they are.


And, this? This was when we pulled the van over on the side of the road at a completely random spot, scrambled over some rocks and found a perfect view. You know the feeling when the wind gets knocked out of you? This did that to me. I’m sure it was partly the altitude, but it was also this view. Undoubtedly.


There was so much more to this trip – dear old friends, Alcatraz, swimming pools and sushi. And, there was the memory created when my son pulled a fire alarm in the hotel at midnight. Sigh…good times, good times.

Mostly, though, there was so much beauty and happiness and I’m thankful to have moments like these in my life again. The bonus is that it’s really hard to be resentful when you experience goodness like that.

Are You Whole?

posted by Momo Fali on March 1, 2016

Well, are you?

Oh, I know. Half of you are just staring at the words thinking, I don’t even understand the question!

Let me back up.


Last week, I was keenly aware of how fulfilling my life was. My son had a successful surgery (lucky number 13, to keep his eardrums from collapsing, because OF COURSE his ear drums are collapsing), work was going well, I exercised, I studied, I had dinner with friends and even had time for Netflix. One day, the sun came out! Thanks, Ohio!

Then something happened which made me realize the joy I felt was only half as good as it could’ve been. I realized only a portion of me had experienced all that goodness because I was really kind of empty inside. I just didn’t know it.

I know you’re dying to know what my realization was, but that doesn’t matter. It was something intensely personal to me.

YOU might get filled up by a well-placed smile on the face of a grocery clerk. It could be a hug from your child or a liver-breathed lick on the face from your puppy. It’s whatever you need, at a given moment, to make you feel like you are FEELING with 100% of you. It’s fulfillment multiplied because your soul has soaked up enough to make it a puffy, smiley-faced sponge.

The trouble is being able to recognize it. I certainly didn’t feel like anything was missing – quite the contrary. So, how do you make yourself whole when you don’t even realize you’re half-empty?

My suggestion is that even when you think you’re at your peak, push on. Try new things, travel outside your comfort zone, let people in, read more, believe in something greater than yourself, give back, practice acceptance, trust people, LET GO.

You may think you have exactly what you need. You may feel complete, but there’s a chance that a new experience will move you away from being a fraction of yourself. And what’s crazy is that you may never know you were missing anything until you find it.

You’ve certainly heard that you should give your best effort, but do you receive with that kind of effort too? Most of us don’t think we deserve an abundance of happiness, because we are defeatists. We believe that bad things happen to good people (which they do…they definitely do), but good things can happen to good people too.

So let yourself be whole. Trust me. It feels 100% good.

Dear Typical Parent,

Hi there! I saw you this morning at the bus stop, taking pictures of your kids in their new clothes with shiny backpacks and haircuts. My son was the little guy with a hole in the back of his shirt where he ripped out the label because he couldn’t stand the feel of it against his skin. He had last year’s backpack even though the zipper is broken, because it’s familiar to him and he was also wearing last year’s shoes because he doesn’t grow much and they feel just right. Kids with autism like things that are broken in.

I noticed your son’s shiny braces, too! My son needs braces, but he can’t get them yet. He’s had two surgeries to have teeth removed (not at the dentist’s office, but at the hospital because that’s where kids with heart defects have to go), but he needs to have even more taken out before we can think about braces. That will be surgery number 14…I think. I’ve lost track.

Your daughter was the one first to ask how old my son was; probably because she’s seven and taller than he is. See above, regarding heart defects. He gets a shot of growth hormone every day, though, so I’m hoping he looks like a nine year old by Christmas break!

At first he didn’t hear the question, because his new hearing aids are still on order. After she asked three times, your son was shocked after my son said his age, so I said, “No, really. He is 13.”

Your boy replied, “He’s so little. That’s weird” and it was awesome how you nervously laughed and didn’t correct him.

When your kids come home this afternoon, they may tell you that my son sang the entire time he was on the bus. Or, that he bounced in his seat, or that he did something completely off the wall like throw something out of the window. I hope you are like the parents at his first primary school and tell your kids that he may not be able to help it, but if you’re like the parents at his second primary school, I understand that your first reaction will be to call the school and attempt to get him removed from the bus.

I know my son doesn’t look like yours, act like yours, play sports like yours, eat like yours, or talk like yours. That’s because he is not yours. He is mine. He is unique and quirky and sometimes the most frustrating human being in the world, but he is a child. And, he’s a child who needs an education just like yours. He’s smart enough to score on a 10th grade math level, but sometimes he can’t get his actions and words to match what’s in his brain.


Tomorrow, after you’ve had a chance to talk to your kids about inclusion and how every child deserves a chance to go to school I hope they will greet him with hearty hellos. I promise, if they do, I’ll do the exact same for you.




Christmas Crafts

posted by Momo Fali on December 22, 2014

In the midst of shopping, wrapping, singing and snacking, our family has been hit with the flu. My 15-year old daughter missed her first day of school in years, I got a bonus bronchial infection and my 12-year old, autistic son felt so bad that he actually allowed a nurse to swab his nose without a fight. My husband? Well, his cheeks turned rosy, he sneezed twice, took a nap and was all better.

I am increasingly anxious, because I haven’t been to the gym or gone for a run in six days and my daughter is so bored she actually started cleaning the bathrooms without being asked. My son is anxious AND bored and walks around moping a lot asking, “What can I doooooooooo?”

Since he is especially pathetic when he’s sick, I do my best to keep his mind off of it so we don’t get sucked into his tears and start handing him Christmas presents early. Video games and movies aren’t great options because the more he lies around, the more weak and mopey he gets. So, like any good mom, I brought out the crafts.

But, unlike a good mom, I couldn’t remember how to cut a snowflake.

spider snowflake

Thankfully, he likes spiders.