"I'm never going back to school again!"

Very, very unhappy little girl after school today!  Broke my heart, as a mother, to see her so agonized.  Katie is convinced that she is stupid, that she is completely hopeless, because she cannot concentrate in school and get things done like the other kids in her class.  Had a whole long tearful tirade about how school is awful and no one there likes her and even the girls who are supposed to be her friends aren't nice to her and her teacher hates her and is always mad at her and her big sister hates her too and won't wave to her in the lunchroom and the neighbor girl ignores her too, and so on and so on.  Absolutely shattered and sobbing.

I'm so angry with myself for not getting on top of this sooner, before she really started to internalize it.  I thought I had to find the best place to get comprehensive care, but realize now that it can't wait any longer.  I talked to her about some people's brains having a harder time focusing and remembering, and that there is some medication we might be able to try to help her be less distracted.  At first she thought that was hopeless as well, but then she came out of bed at 10:40 last night to tell me she thought maybe she could try it.  Poor thing, laying awake that late worrying about it!  I decided to just start with her regular pediatrician for now and get her on some meds as soon as possible, and worry about more thorough assessment later when I find the "right" place.

Rocket Math Blues

Katie is feeling really down on herself lately over "Rocket Math", a timed drill with approximately 20-25 addition &/or subtraction problems they are given a minute to complete.  Apparently there are different levels, when you can complete sheet A in one minute, you move up to sheet B, then C, and so on.  Katie came home crying because she is still on sheet A, and most of her friends are nearing the end of the alphabet.  She knows the answers, she just cannot complete it within that one minute, so she's been stuck at that first level all year.  Poor Luv!  She feels really stupid and is embarrassed  to have her friends know what level she is on.  She says she never wants to go to school again.  I need to be looking into the best place to get her some further evaluation.

Parent Teacher Conferences

Uh oh, not so good this time.  Both girls had less than stellar reports this time through, and both for the same reason, lack of focus and organization.  Katie's reading at a 2nd grade level, top in her class, and consistently proves that she knows how to do all of her work, and gets the right answers, when tested one-on-one with the teacher, but cannot seem to get anything done during regular class time. She is far too distracted by everything going on around her.  She gets through about 1/4 to 1/3 of a worksheet in the time it takes the rest of the class to finish, then forgets to bring the work home to finish, or refuses to do it when she does bring it home!  Or if she does get something done at home, it sits in her folder and she forgets to hand it in! 

I don't know whether this is straight ADD, which definitely runs in our family, or if it's the sensory over-stimulation causing the problem.  Think of how difficult it would be to work on a timed math quiz when you are hearing the buzz of the lights above you, feeling the tag in your shirt and the seams in your socks, having to concentrate on the weight of the pencil in your hand and the correct amount of pressure to use to write with it and not break it.  She cannot tune out the extraneous information her body is perceiving the way most of us do.  It is so hard to see her struggle like this.

Cheer leading

Katie is absolutely ecstatic to be taking a weekly cheer leading class!  Having a physical outlet like this is excellent for her and she grins from ear to ear the whole time.  She does have a little trouble paying attention to the coach sometimes, because she's busy spinning or dancing around, or watching to see if I'm watching her.  She gives it her all, even though it is clear she's not the most coordinated in the group.  You can see some of the lack of positional awareness and gravitational insecurity, but none of these girls are particularly graceful, so she doesn't stand out too much.

Insurance Frustration

Got a letter from the OT clinic today saying they received a denial from the insurance company for more OT services for Katie.  SPD does not have the same sort of recognition as other issues, so all the insurance looks at is the physical issues (delay in motor skill development), and Katie did too well to meet their standards for needing care.  Ugh.  Now to find somewhere else to get some help...

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.

Whoa! Flashback

Had an episode this afternoon that felt like we were right back to where we were two years ago.  Katie came home from school and immediately demanded that I put on a particular DVD.  The show I was watching was not quite over, so I told her it would be her turn in 10 minutes.  She was not happy with that answer and began fussing and yelling at me, so she was escorted to her room (not very gently I'm afraid, I admit I got mad in a hurry).  She continued to scream and carry on while I watched the remainder of my show.  I wanted to just leave her to work it out and settle herself down, but I could hear things crashing and being thrown, so I went in to try to talk to her and keep her from doing any actual damage. 

I went in and sat down without saying anything to her.  She glowered at me and made a show of tearing up a piece of paper and throwing the tiny bits as far as she could, then picked up some toys and started throwing them around.  OT taught us that deep pressure touch and joint compressions can help to calm her body down and reset the switch, so to speak, on her level of arousal.  I told Katie it was not ok to throw things in her room, that she needed to control her body, and that I would help her if she was unable to do it on her own.  When she chose to continue throwing things and yelling at me, I took her into my lap and held her in sort of a bear hug to provide some of that calming pressure. 

She cried and threatened to do every naughty thing she could think of, "I am never going to settle down!"  "I am going to break all my crayons in little pieces all over the room!"  "I am never brushing my teeth again!" etc, etc. and I just held her silently.  I told her I would talk to her when she was under control, and then just waited, all the time wondering if I was doing the right thing.

This hug was meant to provide that deep pressure and joint compression, but I know there have also been times and places when it can be argued that a restraining hold on a child can be abusive.  That certainly wasn't my intention, I just really wanted to calm her overwrought system. There are autism spectrum kids who are rolled up in mats, or pressed with large pillows as part of their OT, and Temple Grandin's squeeze machine was created for this very purpose, so I thought this should be ok.

I don't even remember how she eventually wound down.  I tried to get her to try some deep breathing with me, but it only made her mad and she says she can't do it when I'm trying to show her how, that I should leave the room and let her do it by herself.  The storm was calmed enough by then that I agreed to do that.  The whole thing had lasted half an hour. 

I left the room exhausted and discouraged that we were back to having those kind of melt downs again.  I had thought we were doing better.  Disappointed with the way I'd handled the whole thing, feeling like I should be able to manage this better by now, that I should have been able to calm it down faster. I still have so much to learn.