Misunderstanding SPD Kids

One thing I can say as a parent of a sensational kid is that it's easy to incur the judgement of other parents.  Looking at some of the behaviors of some of our kids, some people just see brats.  In Miller's example, LaTanya's teacher Miss Sorensen "doesn't say so, but she thinks the real problem with the girl is that her parents aren't strict enough and fail to make LaTanya do what she should".

I know for a fact that Katie's father and his wife have thought this of me many times over the years.  Much of the time when Katie is at their house for the weekend she controls a lot of her behavior out of intimidation.  She can hold it together for 48 hours if she isn't pressed too hard, but at home, where she feels safe, all that pent up "stuff" comes pouring out and we have some tough Sunday nights sometimes.  Her dad thinks I baby Katie and let her get away with too much.  I know it can look that way from the outside.  

The problem is that this holds a child with a disability (man, it's still not easy to say that about my own child) to the expectations of a typically developing child, and it's just not the same.  They aren't playing with the same equipment.  "Humans typically use reason to override reflexive behavior- thinking through situations in order to avoid getting to the 'fight/flight' mode unnecessarily.  The problem for (Katie) is that her 'fight/flight' response occurs so fast she doesn't have time to cancel it out with reason.  As a result, she (reacts) to situations that aren't really dangerous". (Miller, Sensational Kids)

When someone calls a typically developing kid a name, that kid can stop and think "Oh that's just Mikey- he's always causing trouble" and brush it off, but, when someone calls Katie a name, she immediately reacts in a way that is beyond what is expected in the situation, because she doesn't have time to apply reason the way we'd expect someone her age to.  So she looks like a brat.  Her behavior seems babyish.  She looks like a spaz, a freak, a weirdo.  She doesn't want to respond this way, it's just the way she's wired!

Re-Evaluating

Took Katie back to the Katie Lady yesterday to be re-evaluated to be covered for some more OT.  Her first round of OT was summer of 2010 and discharged when she started Kindergarten.  She has done really well for about a year, but now in the last couple months we've been having a lot more of the old-style meltdowns again, so I wanted to see if more OT could help at all.  The problem is that since SPD isn't quite considered a medical condition, OT has to be submitted/billed as fine or gross motor delay, rather than the sensory problems.  Yesterday Katie performed a lot better on the gross motor tests than Katie Lady had expected (guess she's made a lot of progress in the meantime!), so she is not sure if her evaluation will be considered enough to qualify for the services.  Now we wait and hope.

I think it's also time for me to look for a psychologist for her to see as well.  Anyone have any recommendations of someone familiar with SPD?  It's so hard to know just which symptoms/behaviors are specifically caused by sensory issues and which are issues of the control that she feels she needs because of the instability of her experience of the world because of the sensory issues.  Katie Lady suggested that maybe some of the behaviors are now learned responses that began when she had no better tools of expression, and continue now, even though they are out of proportion, because she hasn't learned alternative ways to express herself.  So some sort of behavioral therapy might be the thing to give her skills to regulate her emotions.

Still so much to learn

Reading another excellent book on SPD tonight (Raising a Sensory Smart Child by Lindsey Biel, M.A., OTR/L  and Nancy Peske) and realizing how much more I still need to learn about this condition.  Feeling disgusted with myself for being so impatient with both my girls at times for things that seem so simple to me but may be beyond their control. 

Specifically, a section about motor planning problems (dyspraxia), the authors are explaining that it takes these children many more repetitions of a physical action to master it, and still "every task that required him to use two hands in coordination had to be taught separately.  Even when he finally learned to pull his pants up, he was utterly lost when putting his socks on, although it was basically the same process, because like other dyspraxic kids, he had trouble generalizing skills and applying them to other situations."   I remember losing my temper with both of the girls at various times in almost exactly this sort of situation, "You've got your pants on already, why is it taking so long to get those socks on?!?" etc.  Lord, please teach me patience and help me to see them the way you see them.  They need my support and understanding, not more criticism. 

Symptoms- Distracted (bothered) by sounds not normally noticed by others.

•   Kate can be acutely aware of the humming of some electronics or ticking of clocks and can find it hard to ignore them once she has noticed.  Frequently an excuse for not being able to fall asleep.  She is terrifies of bugs, and nearly had a heart attack when she could hear a fly near her bedroom window that I could not locate and kill.