Through their eyes....

Ada at Special Olympics, 2008

Ever since my first child, Ada, was a little girl I've wondered what the world looks like through her eyes. We are all unique and have our own vantage point, but some people 'stand out' a bit more because of their differences.

Ada has a small pixie-face, an open, trusting smile and long, beautiful fingers, all wrapped up in a body the size of a 10 year old child. She is 24 years old and has been this size since she was about 10! She has a rare from of dwarfism called Russell-silver syndrome, as well as autism. She is truly unique!

It took me a long time to forget how different she looked from other people because people just love to stare at her. She smiles, I try to.

My mantra was always this:
she is just as different from you as you are from her.

And, I believed it..and still do. Not everyone comes in the same, general size or shape and as human-beings, we have to accept this.

But, it's not easy for others to accept that my child doesn't fit their image of what a child should look like. Oh well.

I have spent countless hours worrying about Ada, crying about her challenges and trying not to take all of the comments and stares so personally.

Now, I have another little girl, Lauren, and again I wonder what information she is receiving from the world. In her mind she is charming, charismatic, cute as all get out, funny, interesting, curious, intelligent and loving. She can climb mountains, knock down mountains and conquer the world.

I know that not everyone is going to see that in her, just as not everyone recognizes Ada for the peaceful, accepting and fun-loving young woman she is.

When people see Lauren, some see the traits of Down syndrome...the almond eyes, the awkward walking style, the signing in place of speaking....and, they think about it what they will, based on their individual makeup.

I imagine that they place some sort of value on what they perceive as her most obvious attributes: Is she as cute as a typical child? How well is she doing for a child with Ds? How much time does her tongue spend outside of her mouth? How hard must it be for her Mom to raise her? Is it worth all of the trouble?

the answers:
Certainly!
Well!
Not much!
As hard as it is raising any child.
So much.

I have spent almost half of my life working as a mother and trying to get inside the heads of my children, especially my two daughters with special needs. I want to know what they know and see what they see. And, I want others to see in them what I see, though I know that will only happen occasionally and with people who make an effort.

I don't know how I got so lucky to be blessed with these amazing children; I just hope that I can someday be worthy of their praise.

Now, Lauren and Ada have one another to love and accept. They get this love and acceptance from others, but it seems right that they can enjoy it from their own unique perspective, without the weight and judgment that the world puts on them.

Ada

Ada is....
my 23 year old daughter. She is very unique, extremely challenging and sometimes frustrating. When Ada was born something special, some incalculable shifting of the moon and the stars and planets occurred that resulted in a being that would bring something to the world that noone else ever could. Something happened to make her into the interesting, amazing little person she was, is and I hope she will be again.

When Ada was 7 months old we discovered after much trial and error that she had a rare growth disorder known as Russell-Silver syndrome. It is a form of dwarfism that gives its few members unique facial features, short stature, a petite build and a whole array of medical issues, though Ada does not have hardly any of them. This was a difficult thing to hear but I had already accepted her and loved her so fiercely that there was no way I would let anything or any one stand in her way.

To fast forward this whole story so that I can get to my point, Ada was later diagnosed with Autism and most recently with Bipolar Disorder (along with 84% of the rest of the world...ha ha).

So what does this = ?

Well, take a person who has anxiety, very little insight into her own emotions and very little skill at communicating her feelings and add a dose of mental illness that is caused by a bio-chemical imbalance in the part of her brain that regulates emotions. What do you get???????

A ridiculous amount of stress....that is what. Seriously. God has a great sense of humor.

I don't know if I should laugh or cry. Lately it's been a lot of the later. I'm so sad about Ada. I have so little hope right now. She says she wants to try new things so I get her signed up...things like Special Olympics gymnastics and a girls weekend with some of her school mates and respite provider. She says she'll do these things but when the time come to do them...she withdraws, digs in her heels and refuses. And, once again, my hopes are dashed. I want her to try new things: I want her to find her niche in life and to find something that makes her happy.

Tonight I attended the first of 10 weekly NAMI meetings and cried through the whole thing. I need help and I need support and I know that this will help me understand my wonderful, unique and challenging daughter better.

Tomorrow's a new day and perhaps Ada will decide that going to a hotel, away from her siblings and the daily routine of our home life will be appealing. Perhaps she willl...but if she doesn't we'll push on. It helps to write it out - it doesn't seem as overwhelming.