I had the occassion tonight to remember just how far my children have come. I still worry about their disorders and how it will effect their lives ... but there was a time that that worry consumed my prayers for them.
When Benjamin was little, till he was about 10 years old. He could not stand to be touched. He didn't like hugs and he really didn't like to be cuddled. When he was about 4 or 5 years old, it just broke my heart. While I'd see other 4 and 5 year olds run and hug their mom's ... he'd barely kiss me on the cheek ..and I could barely hold his hand. He had to initiate the touch and he had to control the length of the touch. I just knew that children, like it or not NEED more touch than that.
But, to force the touch, caused so much more anxiety than he could deal with in his life.
So, after he was asleep. Sound asleep, I'd go in and touch his hand and when he didn't stir from that, I'd pick him up. I'd hold him and rock him and I'd sing to him and pray over him. Sometimes as much as an hour. Night after night I'd go in there and hold my baby boy. I did it until I could no longer pick him up. (He was pretty big before I gave up on it too!) Then, I'd go in and hold his hand, and stroke his head ...and sing ...and pray ... please God ... help my baby boy.
He got into some therapy ... he'd been diagnosed as Pervasive Developmental Disorder -NOS and was suggested we go to Occupational therapy to deal with the sensory issues that often go along with PDD-NOS (a type of autism). As we started to work with the Occupational therapist ... Benjamin started to bloom ... in a way that was incredible. It was exciting for us as his parents ..and for the therapists. It was also exciting for the doctor's as they realized that for all the information they'd had in front of them ... they'd been wrong. Benjamin had not been Autistic, he'd simply been SEVERELY effected by Sensory Integration Dysfunction. As the sensory issues came under some kind of control ...his social skills bloomed.
With the continued therapy we knew we were dealing with a processing disorder, OCD, Tourette's syndrome rather than autism.
The anxiety levels were still there, but managable. He could handle being touched ..and hugged. Not cuddled, but hugged.
About the time that Benjamin came out of his social box ...
Samuel, my oldest son's OCD went into high gear. I could see fear
controlling almost every aspect of his life. He couldn't function if he didn't have
answers, he couldn't move forward if he didn't make the right steps, if he
didn't say something right he had to repeat it (and heaven forbid you try to
tell him to go on!). The anxiety levels would build to the point that you'd
have thought the world was coming to an end. The fear in his eyes was real, and
palpable to those around him. It was heartbreaking and I couldn't imagine
trying to exist in his body.
A song came on the radio, I couldn't hear it without praying it over my children. The song was meant about parents dealing with a child with Cancer ...but for me ... it was about my children and their lives not being what others are ... the first verse was about Benjamin, the second was Samuel ... and the chorus and tag were a prayer to God ... please God ..these aren't just any boys ...they're my sons!
He's My Son
by Mark Schulz
I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understnad
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
Can You hear me?
Can You see him?
Please don't leave him
He's my son
This week, I took Benjamin to the neurologist. His medications were cut down, again.
He's on so little now. Half a pill for the tourette's, half for the seizures. None for the OCD ... amazing ... simply amazing.
Samuel will be taken off his TS medicine this summer to see how it goes, leaving only his OCD medicine.
Incredible ... how far we've come in the years since I prayed that song with tears in my eyes ... and a catch in my voice. He's answering my prayers ... I'm seeing young men grow up in front of me ... who deal with life with courage and grace and dignity ... and who have fears and put them in their place. It's a good thing.