Friday, June 10, 2005

Differences in Common

Raising a special needs child is a blessing of mixed emotions. She has taught me that the capacity of patience is almost inexhaustable. After 10 years as Lil Sepia's mom, I now know that my road will be filled with joy, pain, laughter, repressed anger at and endless prayers to the GOD that gifted me with her.

A couple of months ago, I watched "Riding the Bus with My Sister", a Hallmark tv movie and feel good tear jerker that will send the "normal" world their seasonal dose of "Thank God, that isn't me" or "Poor poor woman, I feel her pain". Spare me. My reality doesn't end with credits and a good cry.
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Andie Mc Dowell played a harried career photographer that is forced to reconcile with her developmentally delayed sister, played by Rosie O'Donell, after the death of their father. After watching this, I have a renewed respect for Rosie, she played this role without creating a characture or dramatic theatrical overkill. Andie's performance reminds me of my own struggle to deal with the cruel side of society. The side that still throws the word "RETARDED" around as a joke.

When I chose to have my daughter at 31, I would have never believed at the time I would wind up with a child whose existence would so challenged. People can be so cruel, even family will distance themselves out of ignorance or from being uncomfortable around someone "different". Coming to grips with the isolation and stunted sociability has caused me to seek other forms of reaching out to those that I can commiserate with, as well as "typical" parents dealing with the same daily childhood issues.

The reality checks for me come on a daily, if not on an hourly basis. I have chosen not to write much about her. not out of embarassment, but out of frustration. I spend alot of time defending her diagnoses. Mental retardation and Cerebral Palsy are quite a 1-2 punch and my patience with the uneducated and ignorant comments, stares and atittudes wears thinner on some days more than others. When I see children stare, sometimes I take the opportunity to introduce Lil Sepia and give them age appropriate info on her "differences" as well as what they may have in common. The parents I hope will teach their child about disability and sensitivity.

Speaking of that, one of the best books I have read on this topic is "Differences in Common", by Marilyn Trainer. She captures the struggle, with an unflinching look, at the truths of parenting her son with Down's syndrome.

I have read countless books on cerebral palsy, mental retardation, parenting and therapies. Occupational, physical, music, and speech therapies are just a few that have helped my daughter be more independant. It is a difficult balance between sheltering her and pushing her to excel. I fight with family, friends, doctors, teachers and well meaning strangers who want to add their 3 cents to my supposed "plight".

As her mom, I can only hope that I will be able to give her the best of what she NEEDS, most of what she WANTS and pray that society will acknowledge we all have "differences in common".

Who knows, maybe GOD's sense of humor is that WE are the ones who are really "special" and THEY are angels living on earth laughing at US.

I just wonder. ;-)


Blogger Tara Marie said...

When I read this piece on your persoal blog a bit ago I was so moved by your insight and passion in your Mothering your daughter.

I believe you are right,,,,,our children are earth angels,,,sent here to teach others how to look into our selves and realize we all have 'differences in common'.

I have come to a point in my journey that I realize that many of the stares are just from our human instinct to study something to understand it better. We are a society that 'stares' at TV, movies and magazines.....and that we are so used to studing something in great detail without realizing that we are 'staring' if I have the time [I share what the difference is with my daughter] as to why they were caught staring at her,,,other times I just let it be, hoping that the 'starer' made a good observation and that maybe the next time they meet someone with 'differences' they won't stare as long.......or they will move past the staring part and introduce themselves to reach the next level of understanding, that we are all people with 'differences in common'

Thank you for sharing this piece.

Peace, Tara Marie & Emma Sage

6:47 AM  
Blogger Sepialove said...

Thank you all for allowing me to share in this communal blog. As parents of ANY child, there is a need to connect and feel that our experiences are shared and valued.

This is one of those treasured places. God bless you all & keep sharing, I know we have a wealth of info to pass on. ;-)


12:24 PM  
Blogger Moreena said...

Hi Sepia,
I am so glad that you decided to post this here. It is hard sometimes to know what to write/what to say. Anni looks/seems completely normal (unless she lifts up her shirt or you happen to notice the scars all over her neck and arms from various lines and drains over the years), so when I sometimes ask people to keep their distance (if they're sick) or ask them to clean their hands when they enter our house or clean Anni's hands after she's played with other kids, I often get funny looks. Like I am some insane germ-paranoid mother. I sometimes get so tired of going through the whole explanation every time.

I have really enjoyed reading your insights not just on mothering, but also life in general. I hope you find time to post more.

10:00 PM  
Blogger Moreena said...

Oh, and also I changed the color of your post because I discovered that my little "read more" business doesn't work well if mixed with other span tags. I hope you don't mind...

10:01 PM  

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