Posts Filed Under Special Needs

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.”

It…Um…Loves You Too, Kid

posted by Momo Fali on April 17, 2014

“Mom, can you tell me about the autism arc again?”

“Sure, buddy. Autism is like a rainbow. There are people like you, with PDD-NOS, who are on one side of the rainbow and the more autistic behavior you have, the more you slide across the arc. The kids on the other side of the rainbow have a harder time expressing themselves and their feelings, but they understand things just like you do. In fact, even though some of them can’t talk, they are very, very smart.”

“What type of kids are in the middle of the rainbow?”

“Well, again, they understand things just like you do, but maybe they have more tics; like flapping their hands or spinning around, or maybe they have trouble talking to other people.”

“Mom, I think I’m in the middle of the rainbow.”

“You do? Why?”

“Because of my tics. And I know most people aren’t like me, because I really love your double chin.”

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.

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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.