Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Saturday, May 2, 2015

Child Whisperers




I am the mother of two children diagnosed with special needs.

But I am not a parent.

Yes, you read that right, I am NOT a parent.

At least not in the ordinary sense of the word.

To me, parenting is about educating your children and providing them with instruction and social conditioning so that one day they may acclimate into the world and conform to what society expects of them.

For a long time that is exactly what I tried to do.

I became a parent like any other and tried to condition my children, to mold them into society.

I pounded and pounded on my square pegs trying to fit them into unaccommodating round holes.

The end result of all this pounding was nothing more than splintered wood.

There was costly damage inflicted upon all of us.



On my journey to raise unique children, I am beginning to believe that I must redefine my ideas about parenting.

Or at least what this role means to me.

Is it my job to mold what is un-moldable?

To search for a "place" for my children that does not exist?

To send them into a world that does not know them?

It all sounds like madness to me.


And so I search to create my own definition of parenthood.

What does it mean to be a parent of a child diagnosed with special needs?

In this role, when and what am I doing that feels right?

After 16 years of special needs parenting, I can tell you, without a doubt, that it is when I assume the role of an observer that the magic begins.

It is when I watch them.

When I really, really study them, noticing the small things that they do or say that seem to speak so loudly.

Only when I am enlightened, and educated,

 am I helpful to my children.

I listen instead of lecture.

It is when I assume a passive role, that I move forward.

In this role, I am not the parent or at least not the one doing the educating.

It is counter intuitive, feeling a lot like parenting in reverse.

But as an observer, I have learned many things from my children.

They seem to know instinctively of life and love and sing of the simple things.

They value things like honesty, love and togetherness.

They possess warm spirits and pure hearts.

Their messages are the medicine the world lacks.


I do not believe my children are alone in this knowledge.

I believe many parents feel similarly.

That our children are trying to tell us something.

But how do children diagnosed with special needs, many who cannot express or speak, communicate these powerful lessons?

I have learned that it is through me.

That this is my job as a parent.

I am not preparing my children for the world

but instead am being conditioned

to prepare the world for them.

To do this, I must not only be an observer of my children, but also a translator for them.

I must take the foreign language my children speak and translate it into English, breaking it down into small understandable parts so others may hear their beautiful songs.

This is my job as a parent.

I am not raising my children.

I am raising the world.....helping it to learn how to see children who are different.

I must teach the world to value these special souls, to accept them, to learn their unusual language.

For their language has a vibration that seems to resonate in those seeking a more meaningful life.

In becoming more loving and accepting of those who are unable to help themselves, perhaps in a way we begin to heal and love ourselves?

Perhaps we begin to heal the world?

I am not a parent.

I am an observer and translator

a teacher

a child whisperer,

an awakener of the world.