Posts Filed Under Special Needs

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.

Day 20 – Centered

posted by Momo Fali on November 20, 2013

You know how the universe has a way of setting you straight? I used to constantly comment about the awful parents at the library whose children ran around and – GASP – didn’t wait their turn, and weren’t whispering, and didn’t color code their crayons when they put them back in the box after craft time. I judged everyone, because my kid was perfect.

Then I was sent a child with special needs who would change the order of all the books and pet the librarian’s double-chin if given the chance. Though, he might do that color-coding crayons thing.

Yin. Yang.

Our yellow Lab was rotten. She was cute, but she ran away all the time, ate all things inedible, threw up a lot, and had the world’s nastiest gas. Our black Lab won’t leave the yard if we forget to close the gate, won’t even eat the bones we buy her, and a few weeks ago when I gave her peroxide to TRY to make her throw up, her iron stomach held the contents firmly in place.

That’s 50/50 dog luck, right there.

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Earlier today my boss left me the nicest compliment on Twitter. Her opinion is nothing to scoff at, given she’s a multi-award winning, cross-platform media thought leader; which includes her place on the list of FORTUNE’s 2013 Most Powerful Women Entrepreneurs. If you introduce her to someone in person, you need an inhaler because you’ll be out of breath from the accolades. Needless to say, this made my day.

I wrote her back and thanked her, then I stood up, tripped over my own feet, and fell flat on the floor.

Thanks for keeping me centered, universe. Thanks a lot.

Day 18 – Gift Ideas for Special Needs Kids

posted by Momo Fali on November 18, 2013

Every year my family asks me what my kids want for Christmas. My teen daughter’s requests have morphed over the years; as she’s grown, so have her tastes. We’ve gone from Barney, to Hannah Montana, to jewelry, to sports equipment, to nice shoes and gift cards. Those last two things are on my list too.

Not only is my 11 year old son, who is on the Autism spectrum, a super-slow grower (we just moved into a size 7 slim!), his taste in toys hasn’t expanded much either. He doesn’t play sports, other than an occasional game of golf, and his interest in trains, planes, roller coasters, music, bike riding and video games is about the same as it was when he was a toddler.

Since we are running out of storage bins for train parts, recently I’ve felt the need to step outside of the gift box, so to speak. These are some of my favorite things (his, too) for special needs kids.

1. Gorilla Gym Indoor Swing

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The Gorilla Gym is a great gift for the whole family, actually. My daughter loves to box, my husband and I do Crossfit (and the Gorilla Gym AirStraps would give you a great workout), and my son uses all of his earned free time at school to play on the indoor swing. Whenever he needs a break, he can take five or ten minutes to swing and calm himself. This activity has long been part of his sensory therapy and now, even during the cold winter months, he has a place to exercise and refocus.

2. Bosu Ball

Bosu BallThis is another item that the whole family can use, if you can manage to get it away from your child. Not only does my son have an affinity for anything round, he has also sat on a “hippity hop” ball for years while writing, eating, or playing games. The bouncing and squirming helps him concentrate on the task at hand. It’s also been a great benefit to his balance, stability and core strength. Now that he’s getting a little bigger (7 slim!), we’re moving away from the hippity hop ball with Tigger on it, to a more grown-up, Bosu version.

3. Wii Fit U

You may sense a theme here. That’s because left to his own devices, my son would come home from school and play video games. All day, every day. Because he doesn’t play traditional sports, it’s hard to keep him active. The Wii Fit U has been perfect at incorporating fun and movement. Just look at those squats!

4. Weighted Blanket

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image courtesy of www.sensacalm.com

Not unlike the concept of swaddling newborns or the Thundershirt for dogs, weighted blankets help kids with anxiety and restlessness. We don’t own one of these yet, so I can’t recommend a particular brand, but I can tell you that the more blankets I lay on my son at night, the more restful his sleep. I’ve taken to placing a hefty, crocheted blanket on him so he doesn’t get too hot, but still gets the sensory benefit. I’m sure he would enjoy a kid’s version and not the one I’ve been putting on him that looks like it belongs on a grandma’s lap.

5. Blokus

blokusThis strategic game is a family favorite in our house; even when we aren’t playing it I’ll often find my son arranging the tiles into colorful patterns. Not only does it help develop his social skills, this (along with chess) shows him that his actions must be planned. Thinking ahead and good decision making don’t always come naturally to him. In fact, they rarely do. A board game that teaches him this fundamental concept and is actually fun to play? Bonus

When buying for a special needs child, remember to take their individual compulsions and weaknesses into account. You wouldn’t want to buy a noisy toy for a kid who is agitated by sounds nor would you get a rock collection for the child who puts everything in his mouth. Try to find something that lends value in multiple ways, and when in doubt, ask mom or dad for ideas.

 

Disclosure: I was provided with a Gorilla Gym Indoor Swing and a Wii Fit U for review.