Monday, April 12, 2010

For this Child

There is a new show on TV called "Parenthood".  It had various story lines going on, but one involved parents receiving the diagnosis of Asphergers  for their son.  The parents were devastated.  I have actually been thinking about this lately - the word devastated that is.   The word devastated is used a lot when it comes to parents and families receiving a diagnosis of autism.  I am sitting here thinking back to when we received Samuel's formal diagnosis.  I was very emotional and had a few meltdowns in the week following, but I don't think I was ever devastated. 
I had a sense of relief because we finally had a name to put to Samuel's behaviors.  Relief because we now could take steps forward in finding the right course of action to help Samuel.  In the past I have received news that has devastated me, crushed me.  This didn't.  I am not trying to make light of others emotions and feelings.  This is me and how I felt.  Sitting in a hospital room and receiving the news that the baby you were supposed to be delivering that day had died during the night is the most devastating news I have ever received.

I have days when I am overwhelmed by trying to do all that needs to be done to help Samuel.  
Constant, constant, constant.
Repetitive, repetitive, repetitive.
All for one small glimmer of eye contact.
One small glimmer when he speaks a sentence using his own words.
One small glimmer when little arms are thrown around my neck accompanied with those longed for words, "I lub you Mummy."

A Few Joys of Raising Autistic Children
These thoughts were shared at a workshop about autism at a BYU woman's conference - a few of my own have been thrown in
We get to enjoy our favorite movie line quotes  again and again and again.
Peer pressure—what’s that?
If the definition of humor is absurd and unexpected responses—we have A LOT of good jokes!
I actually prefer all my measuring cups, soda cans and spoons, lined up end to end across the kitchen floor.
Fresh perspectives on parenting, relationships, the gospel, and the joys of the alphabet.
The letter T is actually a member of our family.
I may have been compelled to learn it, but what better attributes than patience and compassion.
I know more about parenting than all the other parents I know combined; because they all gave me their advice.
Living with a developmental delay is like watching child development with time-lapse photography—you can actually see the Lord’s hand in it.
Chasing a totally unaware child the entire length of Disney World and back burns roughly 15,000 calories—that’s like 25 doughnuts!
When my child is displaying some echolalia, I just say out loud, “Mum, you are beautiful!”
They say autism is complicated, but with a child who has no social awareness, “What you see is what you get”—could these children be more simplistic?
Children of few words rarely talk back.
It is the lessons we learn from teaching our “outside-of-the box” children, that help us to be better teachers of all children.
Could it be that my autistic child came here to lead me to the hand of God?
If flowers grow best when there is both sun and rain, we must be living in a lush rain forest!
Sometimes it’s nice to be loved by someone who has never passed a judgment.
Are there references to autism in the Bible? Oh, yes!--those who had no guile.
When you live with someone who interprets everything literally, “cashews” become something cows wear on their feet, and “notions” are people who have no shins.

I have this picture of Samuel sitting on the breakfast bar.
The frame has the caption, 
"For this child I prayed."
Samuel 1:27

The scriptural reference is about Hannah, who prays for a son, and vows to give him to the Lord—Eli the priest blesses her—Samuel is born—Hannah loans him to the Lord.
"Wherefore it came to pass, when the time was come about after Hannah had conceived, that she bare a son, and called his name Samuel, saying, Because I have asked him of the Lord." 

 When we walked through the front door with Samuel, coming home from the hospital after he was born, I cried.  Actually, I think sobbed would be a better word.  I sobbed and sobbed.  I felt it was coming from deep within my heart.  I was so relieved to be bringing my baby home, to have him in my arms.  Not a day goes by that I am not grateful for the trust that has been placed in me to raise this special little boy.  He needs me to be his voice.

Six years ago when I was trying to overcome the grief of losing our little girl, Jim counseled me to find something I was passionate about. I think I may have informed him, rather testily I think, that I was passionate about my children, so give me another suggestion please. So, here I am 6 years later fighting passionately for one of my children. This beautiful little boy needs me to be his voice.  I am forever grateful for those who help me and speak for Samuel.
 One voice can be powerful, but I am picturing the Tabernacle Choir!
That is what is needed.


No comments: