Posts Filed Under Special Needs

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.

FullSizeRender(5)

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.

Sincerely,

Momo

 

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.

A First Time for Everything

posted by Momo Fali on October 21, 2014

This post was inspired by Netflix. Come see what we’re watching.

My kids, both born premature, started their life journeys by consistently missing milestones. Crawling, walking, talking (though, I can attest they have both caught up markedly in that regard), running, jumping – pretty much every chart in their baby books was left untouched until months after a child would typically have it filled.

Needless to say, these breakthroughs have been a huge deal around here. A daughter who didn’t crawl until her first birthday or a son who didn’t speak until he was nearly four years old was cause for long-awaited celebration. They weren’t (and in some cases, still aren’t) just milestones; they are rather enormous landmarks. I’ve been tempted to erect monuments.

Now that they’re 12 and 15, the milestones are less about their existence and more about fun. For instance, my son was recently able to join us on the 93 mph Millennium Force roller coaster at Cedar Point. His next goal is to be tall enough to ride Top Thrill Dragster which goes 120 mph and launches you 420 feet in the air. Don’t judge me because I verified with his cardiologist, TWICE, that it was okay for him to ride them. They are  intense, but we love them and when he was finally 48″ at age 12, he loved some of the big coasters too.

With Halloween on the horizon, we’ve started enjoying the experience of watching scary movies with our daughter. Poltergeist didn’t faze her. Probably because she only knows Craig T. Nelson from “Parenthood” and she doesn’t have any concept of The National Anthem playing on the television at 1:30am, then going static for the  night. *shudder* The TV always had to be turned off before the static started! Always!

Of course, the milestone I’m most looking forward to is when my daughter will do the dishes without being told, or when my son learns to keep the shower curtain liner inside the bathtub. Those moments will be GREAT! Some I’m less than thrilled about, like my daughter going off to college. Gulp. That one is going to be rough. Like sandpaper on a rug-burn rough.

One thing is for certain, these are the things that make memories. You don’t remember the fifth time your kid rode a bike, but you’ll never forget the first.

About That Wish You’re Going to Make…

posted by Momo Fali on May 12, 2014

Two days ago was my son’s 12th birthday; the day to commemorate how far he’s come after beginning his life being whisked away via ambulance to another hospital. The same hospital where his dad and I have sat, time after time, wringing our hands in the waiting room during his many surgeries. This child of mine, for whom I have given so much time and even more energy is now nearly a teenager. I never thought we’d make it this far.

And, yesterday was Mother’s Day; a day to remember the first time I held my son. A day for me to cherish my boy and his sister and, honestly, after the 12 years we’ve had with my youngest that’s all I wanted to do. I wanted to savor every moment of motherhood.

The combination of these two important dates were churning up a lot of memories. I was feeling pretty emotional, so when I found out my son was writing some nice things about me at his Scout banquet the other night I thought it was perfect timing. I knew it would be just what I needed to make me feel better and focus on the present.

As I stood with other parents, he approached me with this.

Mother's Day

Then he handed it to me and said, “Here, Mom. I’m sorry I drew you so fat.”