May 2, 2005

Reality Checks

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.

Last night 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.

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.

Here is a previous post on my take on societal perceptions of the handicapped.

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.

Differences in Common Posted by Hello

I have read countless books on cerebral palsy, mental retardation, parenting and therapies. Occupational, physical, music, speech are just a few that have helped my daughter be more independant. It is a difficult balance between sheltering her and enabling her. 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. ;-)



Anonymous said...

Found your blog and can totally identify. Am not a big tv fan, but the " bus" movie was a stunning glance into reality and perhaps the future.. wanted to blog about it, just couldnt get there. I ended up with a lot of thought about my girls and their being sisters, one affected one not.
Thanks for writing the blog I wanted to - and for more check out my Dear Little One Entry and Footsteps on . Thanks

Beloved said...

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've often wondered this myself. As an educator, I often work w/ children w/ special needs and I find that I learn so much more about life (and the appreciation of it) from being around them. Loved this post.