Posts Filed Under Special Needs

Invisible

posted by Momo Fali on February 14, 2011

Since my son was born in 2002, I have had a lot of bad days.  Watching him get taken to surgery nine times, seeing catheters shoved into places that boys shouldn’t have catheters shoved, watching him get stuck for IV’s so many times that I’ve lost track and seeing him almost die twice will tend to make every day feel like a Monday.

There have been so many struggles that parents of a typical child can’t even imagine.  And before someone comes along and tells me how fortunate I am that my son can walk and talk, I will say that I know we are lucky.  I have spent enough time around children in the hospital to know that things could be horrifically worse.

But, there have been struggles.  It took 13 months before tube-feeding wasn’t an ever-looming threat and it was 18 months before he took his first step.  That was after weekly physical and occupational therapy appointments and more genetics tests than even the geneticists knew existed.

He is almost nine and he vomited while eating just yesterday.  He can’t button his own pants.  We found out last week that he needs hearing aides.

As a parent, you fight through these situations.  You modify his surroundings, you buy him velcro shoes, you cut his bites into little pieces.  You, quite simply, adapt.

But, there are certain challenges where there is no fix.

My son is not only medically different from his peers, but also physically, emotionally, behaviorally and socially.  He is tiny, quirky and the most unique individual I have ever known.  Most adults “get him”.  Most kids, don’t.

For the past six weeks, my son has been enrolled in a basketball clinic at his school.  This was more of a social exercise than an athletic one, as my almost nine year old weighs only 43 pounds.

Over the last month, my boy learned to dribble and bounce-pass and he learned to play one heck of a man-to-man defense.  He had fun. He tried his best.

He has no idea that I sat in the stands and cried this afternoon, because I watched every kid on the court look right through him when it came time to pass a teammate the ball.  My husband knew I was crying, as he sat detaching himself from the situation, but I told him that it was making me sad to watch and he replied, “I know.  It’s awful.”

I can’t fault the boys.  They’re young and they wanted to win.  They were smart enough to know that my son couldn’t make a basket.  If he was on the other side of the ball as a typical child, then he would have probably done the same thing.

But, he wasn’t on the other side of the ball and he is not a typical child.  I watched him holding his hands in the air, waiting for a pass, for over an hour.  He got a chance to dribble twice, when one of the parent volunteers TOLD the boys to pass it to him.  He loved those few, fleeting seconds.  I could see the pride in his face.

As a parent, you want your child to shine, not be ignored.  You want the world to see what you see; that inside the quirky kid is a funny, smart, gentle soul.  Okay, he’s obstinate too, but everyone does see that.

It is so hard to have a child like mine, but it is also very special.  It is a joy to see him succeed and to go places I never thought possible.  To me, he is a gigantic force in the universe.

But, to the boys on the basketball court, he is but a speck.

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Lucky Socks

posted by Momo Fali on November 10, 2010

One of my son’s many issues is Sensory Processing Disorder.  It affects him in various ways, not the least of which is that certain smells and textures can make him physically ill.

About a month ago he missed a day of school, not because he had a cold, but because we couldn’t get him dressed.  He wouldn’t even put on pajamas so that I could take him to my mom’s house.  When we tried, he ran to the bathroom with his pants around his ankles and threw up.

On a typical day, it isn’t unusual for him to visit the nurses office because his feet itch.  I can’t get him to wear his coat zipped up.  He is one of two kids in his private school who don’t have to tuck in their shirts.  Seat belts bother him.  He didn’t learn to ride a bike until he was seven because we couldn’t get him to wear a bike helmet.

It is heartbreaking and frustrating at the same time.

Not long ago, I was contacted by a representative from Smart Knit Kids asking if I would like to try a pair of their Seamless Sensitivity Socks for my son.  I was told that these socks are great for kids with sensory issues or autism because they are form-fitting and won’t bunch up.  Also, the design means there are no seams to bother tender feet.

I have to admit that I was skeptical.  I mean, sure my kid takes his shoes and socks off as soon as he walks in the door every afternoon and goes barefoot any time he is able.  Sure, he won’t wear footies or thick socks.  Sure, I had heard that a typical person puts on their socks, then forgets about them, but a person with Sensory Processing Disorder puts on their socks and knows they are there all day long.  They never stop feeling the sensation.  Still…it seemed over the top to me.

Nevertheless, I told the representative we would try them.

I rarely, if ever, post reviews of products on this page.  I would venture to say that 99.9% of you did not come here to read about my son’s socks, but please do me a favor, if you know someone who has a child with sensory issues, tell them about these socks.

They really are seamless, they really don’t fall down and if I didn’t know they were made with polyester and Lycra, I would think they had stitched them out of magic fabric.

My son checks before bed to make sure he has a pair of “lucky socks” to wear to school the next day.  Instead of fighting me, he actually begs to wear them.  You have no idea how much easier my mornings have become.  Did you see what I did there?  I just used “easier” and “mornings” in the same sentence.  If you don’t believe me, look at all of these testimonials from other parents.

I am not the person who created them, nor am I a representative of the stores which sell them.  I am not responsible for marketing them in any way.  I am simply the mother of a child who loves these socks.  And, that?  Makes a big difference in our lives.

Mistaken Identity

posted by Momo Fali on November 8, 2010

The principal at the school where I work, and where my children attend, was walking through the cafeteria the other day when I saw her stop to talk to my son.  A few minutes later, I took a big gulp as she approached the kitchen where I was working

Not that I was terribly worried, as his blatant honesty has prepared me for anything.

Let’s review, shall we?

He once told a doctor that she had a, “really, really, really big nose” and he told an elderly woman that she was dead.  He saw a wrinkled, old lady at the store and said that she needed to use lotion and has even complimented large people…by telling them that he likes their “chinny chin chins.”

And, let’s not forget when he named his testicles, Racer and Jennifer, then proceeded to tell complete strangers about his “babies”.

My son keeps things interesting.  Although he has a whole lot of quirks, there is one part of his behavior that is constant; you never know what he is going to say.

I was thinking of this when the principal walked up to me and stated, “Diane, I have to tell you what your son just said.”

I began to form an apology in my head, but then she continued, “He wanted to wish me a happy afternoon and tell me that he’s been praying for my sister.  He says the most appropriate things!”

To which I replied, “Give him a minute.”

Check Please

posted by Momo Fali on October 5, 2010

I’m going to allow myself to be conceited, because this is my blog and I’m my own editor and I can have an ego if I want to. Neener-neener.

You know how everyone sits down at a job interview and says, “I’m a people person”? Well, I really am a people person. I’m an extrovert, a talker, a social butterfly, if you will. I love people.

And, I hate ignorance.

I have friends of all different races and colors and beliefs. I love them, not despite our differences, but sometimes because of them. I am doing my best to teach my children the same thing.

This likely wasn’t evident when my son called two Muslim woman “pirates” and it surely wasn’t apparent yesterday at one of our favorite Chinese restaurants.

Because it had to seem that we are breeding nothing but intolerance when my son heard a woman speaking Chinese to her child, looked at her and said, “Uh, we’re not in China.”