What You Accept, You Teach.... Riiiiiiight.

by Kari
(Denver, Colorado, USA)

I just read the first example from "The Out-of-Sync Child" on Amazon and I started crying. That is my son, to a "T."

My 3yr old was born with progressive hearing loss. We spent the first 5 months of his life dealing with "Colic" and I even had his pediatrician suggest that I was just suffering from PPD. My son wouldn't sleep. He was only happy when we would swing him jettison style those first 5 months. He wouldn't lay around much, always had to be swaddled and/or held, and was a constant nurser. He didn't like food when we introduced it, but loved the bottle especially after he got teeth.

As a toddler, my son remained a severe fuss-pot. We picked up the term "spirited child" around 1yr old, and it stuck for over a year. Jace was quick to stand, around 4mo's, but was slow to crawl, sit up and walk. He received hearing aids around 16mo's old and hated them, always taking them off and hiding them. He received his first cochlear implant in Sept, 2009, and hated it. We even lost one because he refused to leave it on. He wouldn't eat solid foods, especially those that required chewing, until well past his 2nd birthday.

It wasn't until we began working with a speech therapist almost a year ago that we had any inclination from ANY of his providers or evaluators (he'd been eval'd by the local school board for early intervention services and eval'd by the state for disability benefits) that we had our first suggestion of potential OT issues. In fact, she was certain he had sensory integration issues, and consulted her pediatric OT husband for further information. We moved 5 months later, and my son had a second implant, so the sensory issues were taken off the burners completely over the next 5 months.

Now my son is in preschool, and we have had our second comment about sensory issues, partially because I brought up our prior SLP's thoughts on the subject. We had another eval by an OT, who said that other than low core-muscle tone, my son seemed fine. "just work on the W-sitting, and other than that he seems OK. No follow up required." Two weeks later I got an email from my son's preschool teacher telling me he has been throwing himself on the ground, banging his head, and biting his hands. She said they'd started putting him in time out, but wanted to know if I was

seeing this behavior, and if I was, how was I dealing with it? My first instinct was panic: these people are going to think I beat my child! I thought. Then I reflected, and let the teacher know that I think this is just another phase of my son's sensory issues. As an infant he needed to swing and would flail out with his back like a steel rod when he was unhappy (all the time!); as a toddler he would head butt and body slam a caregiver; now he has turned to the floor/wall/himself for that deep-pressure input he needs.

I never had a name for what he was dealing with until now. I never had the time to deal with the sensory issues during our battle with the hearing loss. Now the sensory issues are at the forefront, and I seem to be the only one taking it seriously. To his providers, I'm overreacting. To my parents, I'm giving him the attention he wants. In fact, I just got into an argument with my dad yesterday because he told me "what you accept you teach" in response to my worriedly venting about the head-banging and hand-biting. I asked him what he thought I should do, spank him (sarcastic!), and told my dad that I would not hit to teach that hitting/biting is not OK. He claimed that I should simply walk away; that the banging/biting would hurt and my son would naturally stop if he wasn't getting that attention.

So today, in Target, I walked away the instant my son threw himself on the ground. Guess what... my son banged his forehead so much and so hard in that 1-2 minutes that he now has cuts and rugburn on his forehead. My parents' response? "Bet he won't do that very many more times." No, because I won't let him. He would have gone on and on until he was bloody, and they just DO NOT understand that. They seem to have given up on the "mommy factor" (he fits more for mom because I'm mom) and now they think that it's because I accept this behavior. Maybe they are right, but I refuse to let my son hurt himself. I refuse to walk away from a 3yr old who can't communicate feelings yet (still working on speech/language). I have to believe that trying to reason with him and help him deal with his feelings WILL prove to be the better alternative to pain or spankings.

But am I wrong?

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Dec 05, 2010
How my heart goes out i was there..
by: marina

Having just read of your three yr old and what he is going through all i can say is this a path i have fearfully trod to the point where my son was wrapped in a sheet strapped to a trolley and i had to sit on him day and night for three days at age 7.

I have been reported to child protection for squeezing his cuddly toy on a day he had been threatening me with knives trying to get me hit him. I understand now it was need for tactile input that was leading to his frustrations along with his other misunderstandings of what was going on around him.

Life in the last weeks since seeing the ot who was fantastic i might add,has changed so much,

I have purchased a gym ball he grabs it when needed i roll it over him throw it at his feet for him to Kick. I have purchased special putty for him to use in class to go with the blue tack he had for sometime.

I guess at age three playdough might do.
I learnt touching him lightly brings on fight or flight so to be firm with him in touching. I realize now it was not a game all the times he asked to be tucked up like a mummy at night.
A cacoon sleeping bag is on my shopping list.
Looking at the weight blankets made like dinosaurs with stuffed toys in I intend to make one that he can put his toys in when he likes and vary the weight himself.

I have found most of the routine exercises my son does himself like water play sometimes having up to five baths with various objects in each one. They can if allowed find their own stimulus well my son has now he is ten and i have just tweaked it.

I had never heard of this disorder all i will say is trust in your son and your instinct swaddle in a blanket or even your arms every so often and use what ever you have to allow them to achieve their needs for the day.

I waited three years for the ot appointment i am so pleased i finally saw her as i was on the verge of giving up. so much has become clear and i understand my son more than i thought possible.
Only a parent has the insight needed.

I would like to know more about the ear connection in this as it seems to stem from this and i wonder if this is due to it being the first contact with the medical profession or a first symptom of spd my son had countless ear infections and his adenoids out and grommits in both ears at age four ?!

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