Momo Fali's: Perspective

Tuesday, January 13, 2009

Perspective

The way I look at the world has changed. It’s not because I’m getting older and it’s, for sure, not because I’m getting any wiser. It’s because I am the parent of a child who doesn’t fit the mold.

My son is not typical. He is not autistic, he doesn’t have Downs, there is no disease, disorder, or diagnosis of any kind. On one hand, that’s something for which I am happy. On the other hand, it can sometimes be frustrating.

The geneticists were sure there would be some way to classify him, but after extensive testing they came up with nothing. He is an enigma.

His expressive speech is that of a three year old, yet his teacher says he’s gifted. He is still in need of therapy, but our county agency doesn’t want to pay for it anymore because his I.Q. is too high.

He has a hearing loss, but it’s not something a hearing aid can help. He loves music, but can not sing you a song. He can read a book, but can’t tell you what it was about after he closes the cover. Yet, he can take a computer test on that book the next day and get every question right. So far this school year, he has taken 103 such tests.

His defective heart is stable enough that he can ride roller coasters and play sports, but an anesthesiologist at an outpatient surgery center won’t touch him because he’s a “heart kid”. Something as simple as ear tubes requires a trip to the hospital. A tonsillectomy meant an overnight stay in the ICU.

He’ll be seven in May, and as of Sunday he weighed 37 pounds. He can ride a bike, but can barely reach the pedals.

His is different. He is special. And, you know what? It's all in how you look at things. My kid’s clock may turn counter-clockwise, but he still knows what time it is.

Labels: Kids, Prematurity, Ramblings

# posted by Momo Fali : 5:22 PM

Comments:

Any way you look at it, that kid ROCKS. That is unchanging, Momo.

# posted by

BusyDad : January 13, 2009 at 5:37 PM

I love this post, Momo. It was very well-written, and gives me something new to think about*!

*Which, by the way, I'm not *totally* sure I'm happy about, since my brain hurts already today...just kidding. I'll make room for it. :)

# posted by

Melisa Wells : January 13, 2009 at 6:34 PM

Thank you for posting this. As the mother of a unique child myself (though am not making comparisons, as our trials are not nearly as extensive as your have been/are), this heartens me.

# posted by

Kori : January 13, 2009 at 6:34 PM

Different isn't bad, special isn't weird. But it's hard being different and special though. (not that I would know, I 'm just WEIRD)

Nice post, Momo. He's got a great mom, and that counts for a lot.

# posted by

Rhea : January 13, 2009 at 6:35 PM

I think there about forty people I could copy this to who could use this wake up call on perspective. I know I did.

Your love for you boy just pours through.

# posted by

MsPicketToYou : January 13, 2009 at 6:39 PM

I've heard it said that God gives the special kids to the really good moms and dads.

He sounds like a really great little guy. You remain in our prayers.

# posted by

Tom : January 13, 2009 at 6:40 PM

Your son sounds like one tough kid and has a great mom that gives him all the love and support he needs.

# posted by

Soge shirts : January 13, 2009 at 6:49 PM

You read my thoughts a little didn't you?

Props for your son, he aiight.

And props to you, Mama MoMo.

You rock :). This was a beautiful post.

# posted by

Irish Gumbo : January 13, 2009 at 7:20 PM

it's okay. my sister is almost the same, and she's 33. she made it in this world, and your son will too. he will rule it. i would vote for him!

# posted by

holly : January 13, 2009 at 8:04 PM

My daughter has sensory issues, even though she's never been formally diagnosed...I have learned that every child is an individual and that for every child there is a different way to accomplish the same thing.

Once I learned that things would be different for us, things became so much easier.

# posted by

AutoSysGene : January 13, 2009 at 8:18 PM

My youngest son (now 13) still fails to fit into any category. I was told at one point he needed special ed and at another that he needed to be in a class for the gifted. I paid a couple thousand dollars to have him privately put thru all sorts of tests ... and the tests came back an "enigma" to the people administering them. He, like your son, doesn't fit into any category. And although for years I was frustrated by it ... now I am glad.

# posted by

Anonymous : January 13, 2009 at 8:23 PM

This is such a sweet tribute, but by the stories you have written, he's more witty than most adults I know, I'll say he knows what time it is!

# posted by

Tenakim : January 13, 2009 at 8:44 PM

I love this. I absolutely love this post.

I think it is just fabulous and is so dead on.

Awesome.

# posted by

Unknown : January 13, 2009 at 9:14 PM

Great tribute--he sounds like a PERFECT boy!

# posted by

Miss Lisa : January 13, 2009 at 9:43 PM

perfectly perfect! love your perspective so very much! that boy of yours is amazing!

# posted by

Natalie : January 13, 2009 at 10:03 PM

Incredible. Amazing post about an even more amazing little kid!

# posted by

Ed (zoesdad) : January 13, 2009 at 10:10 PM

i could say my heart goes out to you, but i don't think you need or want sympathy. it sounds to me like you have a great kid and know it.

i do wish you didn't have to deal with the idiots of the world that make your life harder than it needs to be.

i hope you can overcome the morons that try to throw obstacles in your way to helping your son get the help he deserves whether it's physical, mental, or emotional.

# posted by

nonna : January 13, 2009 at 10:22 PM

I really needed to read this tonight. We have two boys that don't seem to fit a mold and have had trouble and frustration getting them what they need education wise. I love your perspective and I am adopting it. Thanks

Debbi

# posted by

Aunt Debbi/kurts mom : January 13, 2009 at 11:30 PM

Great, inspirational post. I'm still doing the finger thing. It makes sense. Then it doesn't. That's life, huh?

# posted by

Anonymous : January 13, 2009 at 11:56 PM

This was a great post. I was really moved reading about your precious boy. Thanks for sharing!

# posted by

Jamie : January 14, 2009 at 12:20 AM

Amen woman! I embrace that my son is different. I never expected my kids to be like the others though I certainly didn't expect the route we're taking. I agree with Tom (way up in the comments) that the special ones are given to the really good moms and dads. I will say though, sometimes we don't feel all that good at the job. I've become a believer in the Lord doesn't give you more than you can handle. I have to believe in that. Sometimes, that little bit of faith? It's all that I need to get through the day. Keep doing the great job and don't stop sharing him with us.

# posted by

Mama : January 14, 2009 at 12:29 AM

Your son? RULES.

There is NO NEED to label a boy like him. He has provide me with many a laugh and sometimes a hearty scare.

But when its all said and done?
I LOVE your son.

# posted by

Anonymous : January 14, 2009 at 12:35 AM

That was beautiful...

# posted by

Ashley : January 14, 2009 at 1:07 AM

I know that 20 people just told you this post was great, but this was a great post, Momo.

# posted by

Captain Dumbass : January 14, 2009 at 1:42 AM

Wonderful post Momo! The video is a perfect match too.

Congrats to the boy. He is really awesome.

# posted by

Anonymous : January 14, 2009 at 5:32 AM

He sounds awesome to me. He can look at the world like no other and show that world to you.

# posted by

WeaselMomma : January 14, 2009 at 6:25 AM

Thank God your son was given a Mother that appreciates his wonderful unique gifts, and doesn’t try to make him into the ‘norm’. *shudder* I used to work as a Montessori directress with 3-6 year olds. I quit because of the parents and their overwhelming pressure to make their child a genius. I would have loved to have your son in my classroom for us all to learn from.

# posted by

Maureen : January 14, 2009 at 9:40 AM

Momo.
I loved this.
Every word.
And the video was the icing.

# posted by

Anonymous : January 14, 2009 at 9:41 AM

you rock, and he rocks because of the awesomeness of you.

I want to crawl inside your pocket and just watch you for a while. Absorb some of your grace and laughter.

# posted by

Anonymous : January 14, 2009 at 10:06 AM

Ahhh Momo.

You and your son change my perspective every day.

Thank you.

# posted by

DiaperPin Up Girl : January 14, 2009 at 10:34 AM

Momo, your perspective is dead-on, and we're all glad you choose to share it with us.

# posted by

laurelei : January 14, 2009 at 12:43 PM

Wow. Your story and that video are inspiring and eye-opening.

You have no idea how that hit home.

My 4yo daughter is also highly-gifted, but won't be tested accurately because of her acute anxiety disorder. She's highly-verbal, but won't talk to strangers OF ANY KIND. She's extremely physical, but she won't perform when asked.

This will be a very interesting next 20 years...

# posted by

Angie [A Whole Lot of Nothing] : January 14, 2009 at 1:24 PM

Nice. Really nice.

# posted by

Martin : January 14, 2009 at 1:33 PM

I love you and this made me sob.

# posted by

amy turn sharp : January 14, 2009 at 1:33 PM

Crap, Blogger ate my comment for lunch.

As I was saying, I have a kid like this too. None of the labels fit him, even the normal ones. But he's so unbelievably smart.

Perspective is everything.

BTW, if you haven't read it, I highly recommend Barbara Probst's book, When The Labels Don't Fit. Must read for moms like us, IMO.

# posted by

Heather : January 14, 2009 at 2:46 PM

I LOVE your son. Love him. You know that. He's great, and forget the labels. :)

And that guy in the video? I was getting lost in his dimples. LOL

# posted by

María : January 14, 2009 at 3:05 PM

This was a fantastic post, Momo. Loved it. And love that kid of yours. :)

# posted by

Anonymous : January 14, 2009 at 4:48 PM

your son is more than special. he's a fantastic gift-- one that i wish i knew personally and played with, was entertained by, and hung out with on a regular basis.

and his momma is pretty fantastic, too.
:]

# posted by

Anonymous : January 14, 2009 at 5:51 PM

I love the way you write about him, and I'm sure despite your talent at writing, you don't do him justice, I'm sure he's even better than he sounds. And hey, he's got a mom like you. Life has a way of equaling out.

# posted by

Heather : January 14, 2009 at 6:52 PM

Love this. Especially the last line. :)

# posted by

Mrs4444 : January 14, 2009 at 7:37 PM

Are you sure he's not an indigo child?? highly evolved & gifted kid.

# posted by

Anonymous : January 14, 2009 at 8:21 PM

He's pretty lucky to have such a great mom!

# posted by

LeeAnne : January 14, 2009 at 9:06 PM

Excellent post.

I have a friend whose son is similar. She refers to him as "falling off both ends of the scale". I'm forwarding this post to her, I think she'll appreciate it. BTW, her son is now 13 and a most excellent kid.

# posted by

Ann in NJ : January 14, 2009 at 11:01 PM

Thank you for such a great post. I am a firm believer in paying attention to perspective.

# posted by

Corey~living and loving : January 15, 2009 at 2:15 AM

What a great post. Reminds me of my stepson, a little.
LOVE the last line!

# posted by

Putting the FUN in DysFUNctional : January 15, 2009 at 5:38 AM

I'm happy that you see him that way. You're a wonderful mom. And he's a wonderful kid.

# posted by

Mama Dawg : January 15, 2009 at 10:08 AM

*standing up and applauding wildly*

you have written a beautiful tribute to your beautiful boy. molds are meant to be broken.

# posted by

the planet of janet : January 15, 2009 at 10:25 AM

Plus he makes me laugh hysterically when you post his little quips. God made that boy extra special.

# posted by

Kat : January 15, 2009 at 11:58 AM

That is so beautiful. I love that video clip too. Got your blog from the motherhood!

# posted by

Anonymous : January 15, 2009 at 12:21 PM

Your son is perfect in every way. How else would he be able to give you such awesome fodder for your blog?

# posted by

kaila : January 15, 2009 at 4:05 PM

since his 3rd day on this planet, my son has definitely changed my perspective on not only modern medicine, but in humanity and more importantly-in me.

If only everyone could "get it."

Beautiful.

# posted by

Ursula : January 16, 2009 at 2:27 PM

Labels are overrated. He's so cool he's making his own. More power to him. :)

# posted by

Jaina : January 16, 2009 at 5:12 PM

This is why they invented the phrase, "There's more than one way to skin a cat."

His way will probably always be the coolest and most interesting.

# posted by

LiteralDan : January 16, 2009 at 10:03 PM

What an AMAZING post. Seriously. Also I totally got sucked into YouTube watching all the videos of that guy.

# posted by

Rachael : January 17, 2009 at 8:07 PM

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Perspective

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