Spatial Security and Developmental Dyspraxia

I don’t even know if “spatial security” is a real term or not, but it is the best way to describe Hannah’s actions right now.

Hannah was a bit better today.  She was more willing to play with her toys, and she would even crawl/scoot a couple of feet at times.   She seemed to both me and her nurse to be in much better spirits.   I can’t tell you how great it was to go downstairs this afternoon and see Hannah smile as soon as I said her name!

Today’s nurse is the one we have had since we first brought Hannah home from the hospital back in June.  She and Hannah are a perfect match for each other, and I know how much Hannah adores her and how much she adores Hannah.    She remembers when she first met Hannah, and Hannah was so much like a newborn that she couldn’t even roll over or suck her pacifier.

We talked a lot about Hannah’s condition today.  The marked increase in her movement disorder.   Her increase in stiffening up her entire body when you go to move her or pick her up.  Her even stronger need for physical support, etc.

She believes that Hannah has lost a lot of spacial security.   After researching it online tonight, it seems a medical term similar to this is called “Developmental Dyspraxia.”  It fits her situation perfectly.

She always wants to be physically….enveloped, I guess you can say.  She always had some sense of it, but it seems to have increased 100-fold in the past week or so.  She stiffens up if she doesn’t feel that security to the point where she becomes like a dead-weight board.    We have even had to put a pillow behind her little wooden chair this week because of it — she was using it without a problem last week.

When we go to pick Hannah up, she will stiffen up so tightly until she feels that complete security where it is okay to release.   There were times today that even though I held her tightly and securely, she still wouldn’t relax.   Before, she will relax once she is in your arms.

Her nurses and I are doing a lot more PT type of exercises and massages with her to try and loosen those muscles.  I can’t imagine how much it would hurt having your whole body clenched up like that so often.

I noticed tonight, as she was lying in bed with me (as she still will only go to sleep as long as she is cuddled with someone), I noticed that she would not let me cuddle her leaning against the pillow.  She pulled me down so that she was lying completely on the pillow, and I had her wrapped up in my arms.  Almost like a swaddle.

Perhaps this markedly increased spatial insecurity is brought on by her increased movement disorder.  She is trying to hard to control her body now, especially her hands and face, that she is just getting wiped out.  It has even reached the point where she can’t grab her paci and put it in her mouth anymore.  (Even if we put it in her hands, she can’t get it in her mouth.)  At least when she is “enveloped,” she doesn’t have to work as hard at obtaining that security because we are providing it to her.

Tuesday’s appointment with the neuro cannot come soon enough.  I hate the fact there are no pediatric movement disorder specialists her in Vegas!  I tried the single adult specialist, but he will not see Hannah.

Sucks, sucks, sucks.