Thursday, July 9, 2009

Preemies to Preteens

When our twins arrived on the scene around 10 weeks early, my hubby and I were suddenly plucked from our comfort zone and tossed down in a whole new world. We had plenty of experience with the parenting thing, but we had lived blissfully in the land of healthy kids for almost eight years. Other than Darling Daughter flinging herself off of things and requiring stitches on occasion, we hadn't had too much to deal with. In fact, when I woke up in labor that Thursday morning, I really thought that we would just go to the hospital, the doctor would "fix" it with a shot or something, and we would go home to wait another couple of months. When we were informed that: 1. our babies were coming right now; 2. they couldn't be born at our chosen hospital; 3. an ambulance was required; 4. they may not survive and 5. if they did, we would most definitely be going home without them...well, to say we were in shock would be an understatement!

We all lived through their birth (parents and twins) and so did the doctors...even the one that bore the brunt of Hubby's anxious-father-attitude. Eventually, those tiny babies came home. And then we were faced with the task of raising babies who did NOTHING by the book. I'll get into Pip Squeak's adventures another day. For now I'm going to share a little about the Sensory Integration Disorder that our Quatro displayed as soon as he entered the world and has slowly either outgrown or learned to deal with over the last twelve years...from Preemie to Preteen. It's my hope that those parents out there who are dealing with Sensory Issues for WHATEVER reason will see a light at the end of that long, dark tunnel.

That Scary, Noisy NICU

At birth, Quatro's nervous system wasn't fully developed. For this reason, even a light touch on his skin would cause him to stop breathing. He spent many, many days chilling out spread-eagle in the incubator while we sat and stared at him...because if we attempted to stroke him or touch him or heaven forbid HOLD him, he would freak! His heart rate would plummet, his breathing would cease and nurses would come running to pop open the top of his bed and thump the living daylights out of his frail little body. Of course, the nurses HAD to handle our child, and he had to listen to beeps, alarms, voices, respirators, and cries twenty-four hours a day. He coped with this over-stimulation by blocking it all out and sleeping like no baby of ours had ever slept before. All of this, it seems, was a precursor to his reaction to the world when we finally brought him home.

Baby Swings, Bouncy Seats and Mushy Foods

As Quatro was introduced to Life in the Real World, his sensory issues continued. Both of my twins stayed on heart rate/apnea monitors for many months, but for different reasons. We quickly found out that Quatro was NOT soothed by the rhythmic motion of the baby swing or the vibration of the bouncy seat. He was terrified! His body could not register the vestibular input it was receiving. He had no idea where his body was in space, so to speak, and therefore quick movements were frightening. Also, he didn't like the feeling of being undressed or wet. Baths were a nightmare. He craved pressure and swaddling and snuggly hugs. Never, ever scoop Baby Quatro up and hold him up in the air to blow a raspberry on his tummy! Don't rock too fast and finish his bath as fast as humanly possible. His first trip to the beach? Yeah, he slept on a beach towel every second...the wind took his breath away, the sand felt disgusting and the sound of the waves was too much for his ears. The world was an overwhelming place for our little fellow. We began Occupational Therapy around the age of 18 months.

Wearing His Coat and Hood ALL Day Long

As he grew into a small child and went to school, he continued to display his sensory behaviors. If he went to school zipped up in his coat, then he STAYED at school zipped up in his coat. No one could convince him to remove it no matter how warm it was in the building. Forcing him to take it off resulted in quiet tears as he felt rattled and confused. (Although the teachers thought this was cute, the other kids thought it was weird!) Taking him on outings with the family or even holding childhood rituals like birthday parties were events that had to be modified. The circus? Forget it. Crowds of people, weird smells, strange noises...too much! He would FALL ASLEEP as soon as we took our seats in the movie theater. It didn't matter that he was really excited to SEE the movie. He couldn't help it. During his own birthday party, he would retreat to our bedroom and hunker down under the covers until all the craziness was over. On the Fourth of July, he and I would stay in the house and turn up the tv to drown out the horrifying noises. Around this age he began to roll himself up in his comforter at a order to fall asleep. Without the pressure sensation, he would stay awake wiggling for hours. Also, foods were a problem. Different textures would cause him to gag. We learned how to "brush" him and do joint compressions. We brushed the inside of his mouth before he ate. We bought him a weighted vest. We went to therapy where he was put on platform swings, climbing walls, huge balls, ball pits, you name it, it was done. Slowly, he began to learn to cope with the overload of signals life threw his way.

Jumping Off Diving Boards and Riding on Skateboards

If you had told me five years ago that Quatro would spend his twelfth summer flipping off the diving board, swimming underwater like a fish, LIGHTING his own fireworks, mowing the lawn, going to parties and looking forward to our vacation at the beach, I would have called you insane! And yet, here we are. He's a healthy, well-adjusted boy on the verge of teenagerhood and although he's still a tiny bit quirky, he's mostly an average kid. Oh yes, he still makes himself into a human egg roll at night. But the child who wore a hood on his head to avoid the wind in his ears? Now he sleeps with a fan blowing gale-force breezes in his face! He still doesn't want to take a bath...but that's because he's too busy RIDING his MOVING skateboard DOWN a HILL than his sensory issues with water. He still prefers not to eat cheese...ever...but that has to do with taste, not texture. And he has absolutely atrocious handwriting, which I think IS still due to sensory things...he doesn't hold his pencil tightly enough or use a firm enough pressure on the page, but it's at least legible so I don't complain. Much. Really.

If you suspect your little one is suffering with sensory issues, please have it investigated by someone who knows what to look for. Children with SID don't want to find the world overbearing...they can't help it. A good therapy program can make a world of difference in your child's life. It's meant everything to Quatro.


Brianna said...

I never knew that about Quatro. But then again, that's why you told us... or one of the reasons.

You know, I've found that it's always the ones that chase God in their hearts that tend to go through amazing things like this. Not the SID part, but the great recovery. Same for Pip Squeak. I don't ever hear of anything amazing happening to fence sitters or standing still-ers.

It's people like y'all that remind me what life is about. :)

Hezra said...

thank you for posting this. I have kids with sensory issues. I appreciate hearing your story and dedication. Congrats to you for helping your kid learn to be in the world as comfortably as possible.

a Tonggu Momma said...

Thank you so much for writing this post!