Tuesday, September 7, 2010

Tuesday's Truth: Dear Mrs. S.

Dear Mrs. S.

When I sent Munchie Boy to charter school I did not expect to be the one receiving a homework assignment. But I dare say that I am impressed to see you take a personal interest in all the children you teach. Of course I would be happy to oblige and tell you a little bit about my son.

Munch was born nearly 12 years ago one month premature. His little lungs needed a bit of time adjusting so he required the assistance of a ventilator his 1st night in his new world. He spent almost a week in the Neonatal Intensive Care Unit. He was such a small baby, around 5 pounds, and put up so much fight his 1st week of life.

His 1st year was quite a trial...his inability to nurse/feed properly, followed by reflux so severe that it was matter of routine for him to spew his entire feeding, led to a condition called failure to thrive. He had also suffered a birth injury to his neck resulting in a condition called torticollis, which is a tightening of the neck muscles along one or both sides. I had to perform painful physical therapy on him several times a day. But Munch was a trooper and despite the weight loss and the pain he persevered. By his 1st birthday his reflux and torticollis had resolved.

It was at this point we discovered that, due to his torticollis (which made him favor laying his head in one position) and his reflux (which necessitated me laying him in an upright position in his car seat which was perfect to keep him immobile while he digested his feedings) he developed severe plagiocephaly (distortion of his skull). This required cranial banding. To be fitted for these bands was a heartbreaking process where his entire head had to be molded with plaster. He went through 2 helmets the following year and the results were so amazing that, when he graduated, he was a featured case study in the journals of cranial sacral therapy.

At age 18 months Munch stopped talking. He was saying a few words such as "uh-oh" and "mama" and "daddy" but all that stopped. At first we thought it was his big sister talking for him but by age 2 we realized it was something more. He was evaluated by the county and was found to be severely developmentally delayed. We implemented all the appropriate programs: speech therapy where we learned signs, physical therapy and occupational therapy to work on his core strength and daily living skills. And again, he persevered and continued to show progress as he diligently met milestone after milestone.

At approximately age 5 Munch had been on the waiting list quite awhile for testing/evaluation of possible Autism. His evaluation led him to be diagnosed on the Autism spectrum. His "score" was 10 and 10 was the minimum score to be on the spectrum. His official diagnosis was PDD-NOS (Pervasive Developmental Delay Not Otherwise Specified). Mr. Sister and I made a decision that we would not treat him any different and kept our expectations for him high. But we also felt we should avail ourselves to the programs that are out there to help children like Munch. He went to public school for 4 years: Bright Beginnings pre-K, Kindergarten (practice year to get programs in place such as adaptive PE, speech therapy, etc...) Kindergarten a 2nd time around where he thrived, and then 1st grade. At that point he had been pulled out of class so much for these programs that it was hindering his actual school work. Enough was enough and I pulled him out of public school to home school him.

Munch has been home schooled for the past 4 years. He thrived and has done very well on all of his "end of grade testing". Home schooling allowed him the time to complete his work. I was also able to assist his tendency to be very literal in designing a curriculum that suited his needs. Again...hard work and perseverance paid off!

Through the years we've tried several different sports for Munch. He did fine in Karate. He loved diving in which he showcased his bravery and love for all things thrilling. Finally, it was his choice to try swimming and that is where it seems he has found his niche. For the past few years he has been swimming for the Mecklenburg Aquatic Club...his stroke techniques are near perfect but he presently remains slow, although he's finally starting to show signs of speed. He is consistently beating his "personal best" with each meet he attends. I have no doubt that as he grows and continues practicing his speed will catch up to his technique.

Munch never shies away from an adventure and his life, thus far, has taught him that perseverance pays off. He is unique, has an unusual sense of humor, is sensitive, kind, and has developed a strong sense of self confidence. I am certain that if we had him tested again there would be no way he would be diagnosed on the Autism spectrum. In my opinion his developmental delays are long gone, though his handwriting is abysmal. I firmly believe that the situations he has thus far faced has made him a stronger individual and has prepared him for whatever life may hold.

16 comments:

Brian Miller said...

thanks for sharing munchies story...sounds like a rather amazing young man...smiles.

Julie Schuler said...

You are the best mom. I hope you remind your kids of that when Mother's Day comes around. You deserve some extra posies.

Michelle said...

What a cool story! I have a niece who is strongly within the Autism spectrum. Diving sounds like a fantastic activity for her (she has no fear) if they can ever get her swimming! I like reading about your challenges with Munch. Thanks for sharing!

Purple Flowers said...

You and your husband are wonderful and dedicated parents. And Munch is a very lovable boy. I think it's great that he swims. In fact, it's great for everyone!

L.B. said...

Munchie Boy rocks! And you didn't even mention how he's a Wii superstar :)

And coming from someone who's own handwriting is abysmal... handwriting is overrated :)

Raoulysgirl said...

Munchie Boy is "AWESOME!" He is a video game SUPERSTAR!!!

All of that aside...this is an amazing story of a little boy who has beaten the odds time and again...and remained bright and shining all the while!!! Mama and Dad should be proud!!!

Pelican Joe said...

Wow, I forgot most of that! I remember that the doctor minimized his reflux until he witnessed it first hand! Also, I remember that Munch never slept through the night until he was 2 yrs old.

He did come a long way!

5thsister said...

Joe...he was nearly 4 when he slept through the night for the 1st time...it was shortly after his surgery (tonsilectomy/adenoidectomy).

Steven Anthony said...

munchie sounds like a awesome person, that apple did not fall far from the tree ;)

I'm a full-time mummy said...

Munch is such a trooper! My deepest and highest respect for his strong will and perseverance! And for his mummy and daddy's patience and strength and for believing in all things that are possible!

Michelle Hoad said...

Wow. That made my letter to the teacher sound totally pathetic. I homeschooled my adhd/bipolar son for five years and I think it made all the difference in the world. He is now in all advanced classes in school and tests off the chart. But he didn't read until he was nine.

Tina said...

WOW. What a story. Thanks SO much for sharing. Bits and pieces of it are familiar to me as struggles we've had with our boys (I've written about Jake's, but not YellowBoy's, yet.) Your perseverance and hard work has produced an amazing child! Way to go, Mom and Dad. And this Wii superstar thing? I'm sure my boys would enjoy that challenge :-) If you're ever in CO, bring him over for a fierce battle.

Nessa said...

A very fascinating story. Your young man has braved so much already and seems poised for so much more especially with such a wonderful mom.

blueviolet said...

He has sure risen above! What a wonderful story!

Mumsy said...

What an amazing and strong spirit Munchie was and will be!

I believe he draws his strength from his parents also..

NatureGirl said...

What an amazing story of a beautiful little man!

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