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The Life of Sweet Jane

I'm been trying to find a way to start this post for a couple of days.  So, I thought I would just start with my heart and go from there.  How's that?

I think it is very important for parents to talk to their children about how everyone is different and that it is okay to be different.  If we were all the same it would be terribly boring.  I'm glad that the world is full of different people.  It is a true blessing in my eyes.

My friend Marian (aka TJ) has a very special daughter, special as in the best daughter ever!!!! She is a very protective mother over Jane and steps in when she sees that kids are being mean instead of just being curious about Jane.  In fact, TJ wanted me to write this post to encourage parents to talk to their kids.   We both think it is important that you teach your kids that just because a child looks different, may talk different, may be smaller and such that it shouldn't even be a factor.  I'm very proud to say that my kids have been taught that all children are children of God and loved no matter what. Our differences make us unique.

My kids never judge a book by its cover instead they just dive in and enjoy!

I think we should all do that.  So, please today or tomorrow or even next week, sit down with your child and talk about how important it is to not be mean to someone that may be different from them.  Instead encourage them to just be a child and ask that child to play.  Playing knows no prejudice, hide and seek is still the same, coloring is the same and even sharing a snack is the same no matter how different we may look on the outside.  We all want someone to pick us to play with.

I'm very excited to share the story of Sweet Jane;  a mother's perspective of raising a child that is different but is still normal inside and just wants to play and make friends.  You will need a tissue so grab one before you read anymore.

Sweet Jane  
By:  Marian L
Jane arrived two weeks early, weighing just over five pounds. She was not processing oxygen.
At delivery, we discovered that my placenta had died at around the 35 week mark; therefore, Jane had received no nutrients to her brain or body for three weeks.
Her first diagnosis was IUGR (Intrauterine Growth Restriction), and that was the diagnosis her doctors in New York would use for the first year of her life to explain why she was not gaining weight, why she was missing all her developmental mile stones, and why she could not eat solid foods.
Early intervention services took over her care when she was about three months old, but they were in way over their heads and offered me no hope.
When Jane was one, my husband, who is in the Army, was transferred to Ft. Bragg, NC. The developmental pediatrician and EDIS (Early Developmental Intervention Services) met Jane, and quickly jumped into action with a plan that, literally, saved her life.
The first time I met with her developmental pediatrician, a retired Army Colonel, she spent three hours with Jane, my husband, and me. She told us Jane needed to have a coil implanted in her heart to repair the small tear; her tonsils, as well as her adenoids, were grossly enlarged – this we later learned was the reason she could not eat solid foods; her vision was questionable, as was her hearing.
I left that appointment completely overwhelmed with the mountain of her specialty appointments that awaited me at UNC Chapel Hill, but, also with hope that Jane was going to make some progress.
When I arrived at Ft. Bragg, Jane could not walk or eat. We left there when she was three. She was walking, thanks, in large part, to her new glasses. She was eating and thriving. She was still tiny, and her language was still greatly delayed, but she was healthier than she had been since birth.
Four years and seven surgeries later, we are now under the care of the University of Virginia. When we arrived here in Charlottesville, a little over a year ago, it was time to  enroll Jane in a special education pre-school program in the public school. I was familiar with the system of IEP’s (Individual Education Plans,) so I thought I knew all there was to know about Jane.
I was still nervous about putting my little fifteen pound, two-and-a-half-foot tall four-year-old on the bus to head to an immersion classroom with sixteen other students. Only four of the sixteen were special education, so I was convinced the other twelve were going to make fun of Jane or just forget about her.
I had met her teacher, Mary Beth, and was impressed with her right off the bat. Jane gravitated towards her immediately, and that let me know they were going to have a great relationship. I liked the fact the Mary Beth was fresh out of school. To me, that meant she was energetic and full of new ideas. I was right on all accounts!
As comfortable as I felt with Mary Beth, I was still apprehensive about leaving Jane in her care all day. Jane’s speech was so bad and so hard to understand. Mary Beth did not flinch and dove right in to make both Jane and me feel at ease within the first week.
Jane had an extremely successful pre-school year, but at the end of the year, I was hesitant to send her on to kindergarten, and Mary Beth agreed. At some point during the school year, I had met with Jane’s new developmental pediatrician here at the University of Virginia. As he explained to me, Jane was getting too old to use the IUGR diagnosis for her cognitive and physical delays. He did some testing, and eventually diagnosed Jane with mild cerebral palsy and mild mental retardation. The mild CP was something I expected to hear. However, when he used the words mild mental retardation, I felt like the room was spinning.
I was not sad because I thought Jane might end up in an institution or that she would not fulfill some expectations. My first thoughts and fears were how she was going to be treated by other children and their parents. I just kept hearing that awful word, retard in my head. When I called my best friend whom I met at Ft. Bragg, the first thing she said to me was, “Retarded is just a word. It doesn’t change anything about Jane.”
To this day, I remind myself of those comforting words.
I am not ashamed of Jane’s disabilities, but I also don’t feel the need to announce it to strangers. Most are unaware that she has a disability. The only obvious difference is her small stature. She is five years old now, and the size of a small three-year old.
For the most part, Jane seems to move through life without any need for excessive attention. There are some occasions when she and I have been cornered by tactless children. I understand that children are curious and ask questions, but there is a fine line between wanting to understand something and wanting to hurt someone’s feelings. I do not think it is my job to educate the world about special need children. I feel each and every parent needs to make their own children aware that there are individuals that walk, talk, learn, and progress in their own rhythm and pace. I say this because on those occasions, when we have been cornered, the nosy child’s parent is standing right next to them and does nothing to intervene. That is when Mama Bear rears her ugly head.
Today, when Jane got off the bus, she remembered I had not been feeling well when she left for school. She asked me, as clear as she has ever sounded, “Are you feeling better, Mommy?” I was floored. We have just finished our first week of GHT (Growth Hormone Therapy), and already I am seeing a difference in her appetite and language.
Today is one of those days when I am reminded, as she hugs me ferociously, that Jane is perfect Jane.


Thank You TJ for sharing the amazing story of Sweet Jane.

8 comments:

Heather Nicole said...

beautiful post! thank you!

Kelly said...

It is a lovely post, and an important message! Thank you for sharing!

guurrrl said...

This is an absolutely beautiful post. It really touched my heart. I will be sure to share it with everyone that I know. :) Thank You!

Anonymous said...

Beautiful post. I agree that parents should discuss these things with their children and I intend to with my own.

However, I would hope that TJ is also encouraging Jane to answer these questions in hopes of educating her peers. I understand that she does not view it as her "job to educate the world about special need children". But as a parent, if I tell my child not to ask questions, doesn't that just increase the stigma that surrounds special needs kids? We're taught at a young age not to stare and not to ask questions because it is rude, but that ultimately leads to avoidance. All curiousity regarding physical defects or mental defects is squashed because it's "not nice". And isn't the saying that we all fear the unknown?

I grew up with an autistic brother and helped with special needs events all the time. This makes me feel a kinship with anyone that is special needs and their families so I tend to smile as I pass them on the street... but sometimes my smiles are met with angry looks or averting their eyes because they think I'm staring.

If sweet Jane can greet the world head on with a smile and an easy explanation about her disabilities (if asked), might that serve her better than hoping other kids' parents will give them a "talk" about how to "appropriately" interact with special needs children?

I hope this is read in the positive spirit with which I wrote it. This is not a criticism, this is simply a seed of thought.

Marian said...

Jane is usually not aware when someone is asking questions-either b/c she's too young or she's just not attune to criticism. At some point, I agree, yes, she should be able to answer all questions w/ her head held high. Until we get to that point, however, I am her voice and my voice will always protect her.

When a stranger passes us and smiles, I usually assume they are someone w/ experience in this area. Their smile is met w/ mine.

There is a difference in a child pointing at Jane and askin, "Why is she so little?" Vs. "What's wrong w/ her?". The latter question should make a parent swoop in and apologize for her child's rudeness. At least, that's how I have reacted to my own children's rudeness.

Emiy said...

Anonymous? Seriously? You don't see the flaw in your "seed for thought?" You're asking Jane's mother to keep quiet while some kid insults her. At what point was your autistic brother able to answer all the questions?

Anonymous said...

Marian...again, not trying to offend. I will not say I can relate to being a parent of a special needs child, as I can only imagine the protectiveness you feel. I'm just trying to offer a different perspective.

Emiy... I'm not asking her to keep quiet, I'm simply suggesting that preparing her daughter with answers is the best form of defense.

My autistic brother started answering those questions by the time he was school age, thank you very much. He was mainstreamed at school and got questions such as "what's wrong with you?" often. He would answer with "I'm autistic." When kids would ask "whats that mean?" he'd tell them it meant he just thought and learned different than them. This didn't stop all the bullying, but it helped quench the curiousity of kids.

I won't say it was all ponies and rainbows his whole life, but he is a fully functioning adult that lives on his own and cares for himself and has done so since age 18. Which, in the world of autism, is nothing short of a miracle.

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