Wonder

I have been reading the book Wonder with our daughter. If you have a child in the middle school/5th or 6th grade age range then I do recommend it. The book starts with a quote from a song that I haven't heard in a long while but struck me as not only relevant to the book but to Daniel as well. I played it the other day and then looked up the lyrics and found that they are very much relevant to having a child with special needs. I wonder if Natalie Merchant had a child with special needs or a sibling with special needs but it really speaks to me as a parent of a special needs child:

"Wonder"

Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they're seeing

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

Newspapers ask intimate questions
Want confessions
They reach into my head
To steal the glory of my story

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

People see me
I'm a challenge to your balance
I'm over your heads
How I confound you and astound you
To know I must be one of the wonders
Of god's own creation
And as far as you can see you can offer me
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

It's been a difficult few months dealing with many many things around here. Daniel is expressing much of what he doesn't like, but does not always back that up with what he does like instead. This means that he has been very disagreeable with many suggestions often saying or crying or yelling "no." While we appreciate he is not happy with something and lets us know, it is most frustrating not knowing an appropriate solution.

Another thing he has decided to adapt well to, is having tantrums when he doesn't get his way. Since he is not a 2 year old, but an almost 8 year old with these tantrums, this has been somewhat dangerous to each and every one of us and we have all lost our cool at one point or another during these times. I have been scratched and kicked in the head or my hair pulled and the same for Alison and Jason. We have all cried or gotten upset and we have all lost our patience even though we know that he has sensory issues and that getting angry won't help.

We have also been asked difficult questions of our 11 year old such as: "Is it more difficult having a child with special needs?" Or, "Will Daniel ever live on his own?" These always force us to look far into the future and to have to see the dependence that Daniel will most likely need. These force us to see a future that does not appear to look very different from the present. The future looks hard, very hard as it has been in the past with more challenges and physical and mental exhaustion. No one could ever ever imagine in their wildest dreams what it is like to have a child with special needs. The whole life-changing reality of it all.