Reviewing Katie's Sensory Issues

So, as I read through the chapter on the day in the life of a sensory over-responsive kid (LaTanya) in Lucy Jane Miller's excellent book, Sensational Kids, I recalled/learned/summarized these facts/observations about Katie:

Specifically, the type of problem Kate most struggles with is Sensory Modulation Disorder (SMD), which "makes it hard for her to match the intensity of her responses to the intensity of the sensations she feel".  Her system "cannot filter sensations in a way that would allow her to come up with an appropriate response" so when she is "alerted" to a sensation, her brain goes immediately to fight/flight/freeze mode.

Miller writes, "Parents of children with sensory over-responsivity tell me that they feel they're constantly tiptoeing through a minefield- always braced for the next event that will trigger a crisis", and that is precisely my experience.  

Also, "A typically developing child gets a sensory message such as the big bang of a slamming door, figures out the cause, and lets it go.  In children with sensory problems, this ability to let go of past messages sometimes appears to be impaired, leading to a 'backlog' of sensation that accumulates until it overwhelms the  child's coping skills" and "It is believed that the cumulative effect of undisposed sensory messages is what causes children with SPD to eventually fall apart over triggering events that are minor".   What if the reason Kate loses it when another kid calls her a name is a whole morning's worth of sensory alerts she hasn't been able to let go of?  

Miller goes on to describe how "LaTanya" is alerted by the overwhelming fumes of the school bus, the typical noisiness of an elementary school bus, and the inadvertent touching and jostling by other kids that happens on the bus.  Not to mention the sensation of the motion of the bus and its frequent stops and starts, and unexpected, loud traffic noises outside, such as sirens and honking horns.  Little wonder if she prefers to sit in the front seat to minimize some of these, and have visual cues to warn her of upcoming sensations. But sadly, in the example, the other kids won't always let her sit where she's most comfortable, and she is often reduced to tears.  "If LaTanya needed a wheelchair or had another physical limitation that made it hard for her to function on the bus, accommodations like an assigned seat would have been made for her long ago. However, because her handicap is invisible, accommodations are made on a spot basis and only after she falls apart, which just confirms everyone's opinion that this is a kid with big problems."  (my emphasis)

What if Katie is experiencing these same things, and arriving at school already so overstimulated that her system can't calm down enough to focus on the tasks at hand?  How much of what looks like ADHD behavior is actually her inability to take anything more in or process the information in the right part of the brain because she is so consumed with sensory overload?

End of a difficult year

You're probably tired of hearing me complain about Kate's school, but there were just a couple more issues I'll mention to close out that school year.

The 504 plan had stated a place would be provided for Katie to go to calm down when she got upset.  At home she has a small space behind an armchair where she likes to go, which she calls her Katie Space.  She craves the tight confined space, similar to Temple Grandin's squeeze boxes, only without any actual pressure.  No space was specifically provided at school, so Katie improvised by curling up in the space under her desk.  This was not acceptable to her homeroom teacher, however, and she felt she was "yelled at" for doing it.  Here she was, recognizing her body's need to re-regulate itself to calm down and trying to self sooth, and she felt she was punished for it.  I can understand that having her under the desk might not be ideal and could be distracting to others in class, so the teacher had every right to say this was not a valid option, but then GIVE HER ANOTHER OPTION!  

Another trick Katie tried to use to limit distractions from other kids around her while she was working was setting opened folders in front of her at the corners of her desk to sort of screen herself in, as had been suggested by another teacher a previous year.  This too was met with disapproval by her teacher, and she was not allowed to use them.  Here again, the poor girl is recognizing her need for a strategy and trying to problem solve for herself, and is met with (in her eyes) condemnation. 

What would have been the final straw, if I had heard of it before the last week or so of the school year was when Kate came home upset one day, reporting it had been the worst day of her life (not unusual that year).  When asked why, she became teary and told me she had been upset about something and was crying in class.  "But Mr Bush didn't even notice me or say anything!", she moaned.  "Finally, I just went up to him to tell him about it, but he just put up his hand (in a "talk-to-the-hand" type gesture) and said, 'Nope! Katie, nope, that's drama. Drama, drama, we're not gonna have drama now.  Go back to your seat.' "

Now, I understand that there are some attention seeking children who will and do create drama just to get adults' attention, and need boundaries set about when and how their issues will be addressed.  But that is not Katie.  When a child with identified special emotional needs comes to you crying, they need something from you. Their equilibrium is upset, and they need help to regulate themselves back to a balanced state.  Dismissing the child out of hand and telling her to go away with her messy emotions is about as far from what she needs as you can get.  

It was then that it became clear to me what her homeroom teacher's view of Katie and her needs was, and just what an oppressive environment she had been struggling in all year.  Here is the sort of person whose basic philosophy is that kids with struggles should "just toughen up and get over it".  "Quit being such a baby and just deal with it".  My God! Don't you think they would if they could?!  Do you think they enjoy going to pieces over seemingly little things in front of all their peers??! Do you have any idea how embarrassing it is for them to lose emotional control in front of everyone!? 

I found it interesting to note on her report card that in the columns marked 'Uses CARES skills'  (Cooperation, Assertion, Responsibility, Empathy, and Self-Control.) all of her other teachers said Katie did this consistently, while her homeroom teacher said only sometimes. Clearly, they were not well matched.  I still think about writing that teacher a letter to let him know how badly he dropped the ball with Katie. What a chance he had to make a real difference in her life at a really hard time, and how he'd missed it.  I had been so excited for her to have a male teacher for a strong male influence in her life, since her father is so uninvolved.  Having his support and encouragement could have given her such confidence and strength.  Instead, she got the same message I'm afraid she often get's at her Dad's house, "Quit being such a baby and just toughen up."

Power Struggle Stand-Off

We are in the middle of being held hostage by my daughter's unreasonable behavior, and I HATE it!

Katie has had very little homework sent home so far this year, so we haven't had much chance to get into a regular routine for doing it.  Recently she has started to have occasional worksheets, but has been giving me a lot of hassle when it comes to actually sitting down and doing them.  We talked about this with her therapist last week and Kate said she was embarrassed and ashamed of herself to have me call her on it and promised to do better, understanding that she needs to get her work out of the way first thing before doing other activities at night.

But today she came home and immediately got resistant when I asked if she has homework.  I don't mind giving them a little bit of time to unwind when they first get home from school, so I told her she could watch one episode of one of her shows, but then it was time for work.  She has watched the show, but now refuses to take out the homework.  Threw herself on the floor, rolling around saying, "I won't, I won't" and getting herself all worked up.  

Then she tried to claim that Ms Katie had told her whenever she was feeling upset she could just play a game with me to help her calm down.  I told her that wasn't meant for this type of situation, but she has been laying on the floor refusing to work until I play a game.  I said I'd be happy to play a game when the homework is done, but not before.  We are at a stalemate, as she says she is happy to lay there on the floor until I play a game, and I clearly am not going to give in and play any games until the homework is done, if then.  

Just now she ramped up the tantrum even more, screaming so she can't even hear the instructions I'm trying to give her.  So I yelled once, to get her attention and tell her to listen to what I'm saying, but now she is screaming and carrying on that she's scared of me because I yelled.  I am at my wit's and and want to pull my hair out, or thrash her within an inch of her life, so I said she needed to go to her room and be away from me right now.  She's currently in the bedroom screaming about how much I hate her and no one cares about her.  I hate this kind of situation when there is nothing I can do, just feeling hostage to my own child.

Impulsive Aggression

Katie came running to me off the bus yesterday crying so hard I almost couldn't understand her.  "I just didn't think!  I don't know what's happening to me!  I didn't control myself!", was what I could make out.  I hugged her and told her it would be ok and we'd talk about it when we got home.  

I sat her down, told her I wouldn't be angry and asked her to start from the beginning and tell me what happened.  Apparently there was a video the class would be able to watch if everyone was finished with their work in time.  The boy next to her was bothering/distracting Katie to the point that she finally grabbed his hand and bent his wrist back, scraping her nails across the back of it.  

She was SO upset with herself! She couldn't believe she had done it, but admitted it wasn't really an accident, she just got so frustrated!  She said she didn't know what was happening to her and she didn't think she deserved anything good.  She said the boy didn't even tell on her, she told on herself.  The teacher said he would have to write it up and she was terrified of what that would mean.  "I've never been written up for anything in my life!!", she wailed.  

Katie has never physically acted out in anger or frustration with anyone like this before, so I decided to talk to her doctor and see what she thought about it.  As it happened we were able to get in to see the pediatrician right away today and decided to up the dose of her Concerta to help with the frustration tolerance, distraction and impulsivity as the old dose doesn't seem to be cutting it this year.  We had a short conference with her teacher this afternoon too where I was able to explain her SPD and anxiety issues and he seems very willing to work on whatever she needs.

Heavy Changes

2013 has been year of very big, very stressful changes for our family.  I had finished the last of the classes for my Master's last fall.  No more classes = no more student loans.  Since the loans had been paying the rent til then, I immediately started looking for a job that would pay the rent instead.  I never dreamed I would have such a hard time finding something, anything. 

I did some temp work and sought what help I could find, but when it came time for the lease to be renewed, the management declined its renewal, as I had no reliable income.  It was an extremely heavy blow.  I had worked so hard at holding things together and was praying every day that this would be the day I would finally get a call about one of the hundreds of jobs I'd applied for, but it didn't happen.

My lease ran out at the end of March and we had no choice but to move in with my mother in her apartment in New Brighton.  Not ideal by any means, as it's only a 2 bedroom apt, but better than the alternative.  Rob wanted the girls to come and live with them until I got a job and got resettled somewhere, but I just couldn't turn their entire lives upside down like that. I know that they love them and have the best intentions, but they are just not attuned to Katie's special needs in the same way.

I drove them to their schools every day so they wouldn't have to change school with only 2 months left of the year. Originally I imagined we'd be here only a couple months.  Certainly I would get a job any day and we would be able to be back into a new place of our own by the start of the school year. But things did not work out that way.  We are still here. And it's tough.  The toughest time yet, to be honest.  I've never felt so defeated and useless. 

I spend several hours a day several days a week applying for anything and everything I think I could be qualified for.  I'm not being picky- Cub, Target, Wal-Mart, anything would be fine at this point if it gets us back into our own place.  I've had a bunch of interviews, probably one a month at least, a couple I felt really good about too, but none have panned out.  Was called back for a 2nd interview at one place last week and got excited, but it's been a week now without any word, so I'm afraid that probably means they've chosen someone else.  Heart quickens every time the phone rings. 

FIRE!

The fire alarm went off in our building today.  Thankfully it wasn't so loud and alarming as some I've heard, so the sound itself didn't bother Katie.  I didn't smell any smoke or feel any heat, but as it continued for more than just a couple minutes (as it might if they were testing the system or something) I decided we should be better safe than sorry and we left the building.  That's when Katie's alarm went off.  The alarm was much louder in the hallway, and the fact that we were actually leaving our home and getting out of the building was very unsettling to her.   When we got outside there didn't seem to be anything visibly wrong.  Very few other people had come out.  I was going to call the rental office and see if they could tell us if it was a drill or something, but quickly realized I'd forgotten my phone inside.  We instead drove over to the office and went in to inquire.  

The lady there said someone had seen one of the electrical boxes smoking and called the fire department.  Just then a maintenance man comes running in looking for a key and says, "They've got a fire over there! Have you called the fire department?"  So clearly this was no drill or test, there was an actual fire and we could not return home.  When Katie heard this she really started to panic.  The fact that we were out safely wasn't enough, she was terrified that our apartment would burn up with all of our things in it and she was very upset.  I held her and tried to reassure her that everything was going to be ok.  It had to be a fairly small fire and they were already on top of it, so I was pretty sure we wouldn't suffer any damage.  There was no smoke to be seen or anything.  But the idea that it was there at all, in our building was just too much for her.

We decided to go to her favorite new library to wait it out and distract her.  I really wished I'd grabbed by phone to let my mom know what was going on and to find out when it was safe to come back.  But I checked an hour later and it had been given the all clear, so we returned to an undamaged apartment.

Reliance on Medication

Got a call from Katie's teacher this morning because Kate told her she'd forgotten to take her pill this morning.  I let the teacher know that we hadn't actually forgotten the meds, but had decided to take her off of it because it seemed to be making her more nutty than usual.  I spoke to Katie to and reminded her we'd talked about this and she remembered.

Half an hour later though the teacher was calling again because Kate was getting really worked up about not having had a pill.  She was convinced she couldn't function for the day without it.  So I went to school to give her one more just so she could get through the day, and then Dad can deal with her over the holiday weekend!

Terror in the night

Poor Katelyn had the very worst scare of her life (and she has lots of scares!) in the wee hours of this morning.  I heard her go to the bathroom and go back into her room.  Then there was a strangled sort of scream and she started screeching for me.  I went in to see what was wrong and she said, "The window! There's words on the window!."  Sure enough, through the glow of the nighttime light you could clearly read, "U will die!" written on the window with someone's finger sometime when the window had been foggy. When she came back in her room it was directly in her eye line, and she can read now, so she understood immediately!  She was absolutely out of her mind terrified, wouldn't even walk past the window to go into my room to sleep. I have to admit, it was awfully creepy in the middle of the night, even though I knew it had to have been Melanie and not any sort of ghoul.

She came in my bed, but was so shook up she couldn't settle down and go back to sleep, just tossed and turned and whimpered.  About 2 hours later she screams again, certain she saw something moving in my open closet. I convince her there's nothing, but she is back on high alert again. Maybe half an hours later an absolutely blood curdling scream as she sat bolt upright in the bed, grabbing for me.  "Turn on the light! Turn on the light!"  then  "I heard a voice!! There was a really deep voice talking to me!!"

She was absolutely, terrified and convinced she'd heard something and I just didn't believe her.  She sat wide-eyed and trembling, looking all around, and couldn't even stand to lay down again, being in total fight-or-flight mode and feeling too vulnerable if she lay down.  

When she finally could lay down again she was stiff and trembling, and plastered herself to me.  She insisted we keep the light on and was afraid to try to go back to sleep in case she had more bad thoughts.  To take her mind off it, I tried to get her to think about the Twins game we're going to tonight, her first. Talked her through visualizing walking in the gates and finding our seats, seeing all the people and smelling the foods.  That finally helped, she got on a roll talking about it, and then kept talking. I let her keep talking to keep her mind occupied and she finally fell asleep around 6 am.  I was going to let her sleep in and go to school late if she stayed asleep, but she popped up about 7:30 and was eager to get ready for the day.  Hopefully her meds will carry her through most of the day before she collapses of exhaustion.  Don't know what to expect for the game tonight.

Oh my goodness!  I am completely wrung out and in the depths of despair.  Single parenting is awful and I am ready to throw in the towel. Can't stop crying. Thank GOD it's Rob's weekend!

Kate came home from school and immediately lost her mind over having to go to Dad's for the weekend.  She still hasn't gotten over the fact that they were with him 3 weekends in a row because of Easter and felt it was "not fair" that they only had one weekend home with me again.  She threw herself on the floor and began screaming that she was not getting in the car, but then did come when Melanie and I went to leave.  She got in crying and started screaming that she was "not going to get out of this car" when we got there.  She was crying and blubbering hysterically, and I felt I needed the mental break more than ever!  

Kate was determined to cry/scream the whole way there, though I warned she was going to end up with a sore throat.  There didn't seem to be anything I could do, because if I stopped she'd be getting her way, and I really needed to get away from her for a while.  Figured I just needed to try to ignore her to show her she can't manipulate me with her tantrums, but that was really tough.  I turned up the radio, but could hardly hear over her noise.  Eventually I decided to call Rob and let her talk to him.  I got his voice mail and don't know if he could even hear the message I left over her screaming in the background, but he called back before long and I made her talk to him.  I wanted him to hear from her himself the things she complains to me about about being at his house.  By now I was in tears as well, so extremely frustrated and feeling so helpless, and then Melanie broke down too because I was crying and she didn't want to listen to Katie's tantrum all the way there. We got to Elk River before she finally stopped.

After she talked to Rob she continued to fuss for a while, but then fell asleep, having exhausted herself.  But I was so overwhelmed and exhausted I couldn't stop crying from time to time.  She woke up as we passed Princeton and started right in again with how unfair it was and how mean everyone is to her, etc., etc.  I dropped them at the house, where she clung to me and begged me not to leave.  Then I went a couple blocks away to where Rob was working to talk to him about it all.  

I walked up to him crying and sunk my head on his chest, just wanting a moment of understanding and support, an arm around my shoulders telling me it's gonna be ok, we are supposed to be partners in this after all, but he wouldn't touch me.  I continued to cry as I told him about all we'd been going through this school year and especially the last month or so, and finally about getting her started on meds yesterday.  His step-son has struggled with ADHD as well, so he's actually pretty familiar with working on finding the right dose of meds and the emotional upheaval of getting used to new meds, etc.  So at least he'll take the situation seriously.

I drove home feeling absolutely alone and overwhelmed. Still crying and utterly exhausted.  I know this may sound kind of harsh of me to "ignore" her distress and force her to go when she clearly didn't want to, but I NEEDED to get away from her for that time.  I actually spanked her last night when she was throwing a fit (and then immediately felt worse and apologized) but I was just that close to the edge and really could not handle it anymore.  Please God help things level out next week!

"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.

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...

Diggin' the Dirt

The girls are getting a chance to try their hands at some gardening this year in my father's garden.  They planted peppers and tomatoes, as well as marigolds.  Katie prefers to take her sandals off and go barefoot in the dirt, but is then extremely cautious about where/how she steps, which exacerbates her issues with balance.  She came across a worm while digging and practically FLEW out of the garden, so fearful is she of the creepy, crawlies (especially since a certain sister told her some of them bite!)

Hadn't even thought about how her poor awareness of her position in space could influence her overall sense of direction, but the poor sweetheart had a very upsetting experience at Granddad's when she went inside to use the bathroom.  She made it inside successfully, but on coming back out she lost her way and couldn't find us again.  She finally called out for me and I could shout out so she could see us, but by then she was terrified and sobbing, thinking she'd been abandoned.  She said every way she went the fence was there and she just didn't know where we were.  I had to hold her tight for quite a while before she could settle back down, and it brought the evening to definite end for her as she had no further interest in activities after that.

Fear Where Others Find Fun

Picture an average kindergartener going to a cousin's birthday party.  She looks forward to it with great anticipation, but problems arise where there is supposed to be fun.  The party is at Pump-It-Up, an indoor inflatable play place, and for extra fun, it's a glow-in-the-dark party, so the lights are off and instead there are star-like sparkles and disco lights flashing.  It looks really cool and the pumpin' music completes the scene.  While the cousin and his friends tumble down the inflatable slide and bounce houses, Katelyn is paralyzed with fear.  She cries and clings to me, insisting on being held, and begging to go home.


Katie has always had a serious fear of the dark.  Having difficulty with vestibular input, she can't sense where her body is in relation to her surroundings, so she usually relies on her sight to clue her in, but can't in the dark.  She finds the flashing lights disorienting  The music everyone else finds fun feels like an assault to her sensitive ears, as do the screams and squeals of fun from all the other kids.  While Katie loves the proprioceptive input of bouncing and jumping, she only feels safe doing it on her own terms, with no one else around to bump into her or wiggle the inflatable unpredictably.  At a party, though, she can't get the bounce house all to herself, so she just sits in the corner of it and screams if anyone else gets too boisterous.  Every movement feels to her like being tossed on a stormy sea.  She is in perpetual fight-or-flight mode as her body tells her she is in great danger.

Other Auditory Symptoms

• Runs away, cries, and/or covers ears with loud or unexpected sounds.
• May dislike going to movie theaters, parades, concerts, etc.

Not 15 minutes ago Kate deafened me with an ear piercing scream when one of their little neighborhood friends knocked on the door.  That is one specific unexpected sound that gets her every time. (Highly irritating in the spring and summer when kids are constantly coming around!).

Katie likes going to the movies now, but the first time I tried to take her to one (Kung Fu Panda) was an utter failure.  The loud theater volume and giant screen were too much for her about half way through, but Melly was enjoying it, so I had to walk Kate around the empty theater hallways for a good 45 minutes to let Mel see the end, peeking in on her every few minutes to make sure she was ok all alone in there.  Another of the trials of single parenting!

We've actually been to two movies in the last month (a record for us!) and though Kate is excited to go, she does complain that they are too loud at first and petered out on them about half way through.  She wanted to leave Rango about midway through, and then insisted on snuggling on my lap when I said we couldn't leave.  She buried her head in my chest and fell asleep.  I chalked that up to her having been up too late the night before.  But then last weekend we went to HOP, and half way through she got really restless again.  She had insisted on bringing her "blankie" because theater temps are famously erratic, but she ended up using it to cover her head and trying to snuggle up on my lap again.  Just realizing as I write this that maybe this is a protective response to being overstimulated by the theater experience, since she has more than enough attention span to watch full length movies at home. Hmmm....

Symptom- Bothered/distracted by background environmental sounds; i.e., lawn mowing or outdoor construction.

It's funny to me how some of the things they list just as examples fit Kate exactly.  Living in a apartment complex, there is a rather larger mower used by the groundskeeper which can be heard from a long way off.  As soon as she hears it Katie insists on closing all the windows and turning up the TV to cover up the sound.  It's not just that it's loud though, she's actually afraid of it and refuses to go outside while it's running.

Last summer the complex had all the apartment balconies replaced, creating very close construction noises.  She was terrified by their footsteps on the roof, but the couple days they were actually working on our own deck we had to leave the house.  She was in perpetual fight-or-flight mode from the moment they arrived 'til they went home for the night.  Even seeing what they were doing that made all the noise didn't help any, she just couldn't cope.  Simple little things you never even think of with typical children.

Symptoms: Fearful of the sound of a flushing toilet (especially in a public restroom), vacuum, hairdryer or dog barking. Excessively startled by loud or unexpected sounds.

All of the above!  For a long time Kate refused to flush the toilet when she went, and still skips it quite frequently.  But public restrooms are by far the worst.  The hollow sound in multi-stall restrooms seems to echo and amplify the sound, causing her to scream.   

These newer automatic flushing toilets add a whole new element of fear, as she's so small the sensor seems to lose her and they wind up flushing while she's still sitting!  Oh the horror!  The force with which they flush has her convinced she's about to be sucked right down. At the library one day she had to go, but it kept flushing prematurely, so she's hop off and claim to be done, but then still have to go about 5 minutes later, so we'd try again, but she'd get freaked before she was finished, again...after about 4-5 attempts we just had to go home so she could finish going in peace.

Hand dryers in restrooms are another source of panic, primarily because of the noise, but also because of the hot blast of air.  She also hides when I use my hairdryer and the vacuum.

We got a beagle a year ago, and thankfully she's not too much of a barker, because Katie screams and practically jumps out of her skin at every little yelp, and nearly hyperventilates if Tess actually barks.  This extreme reaction to loud sounds was one of the first things that got me thinking of SPD.  Sometimes it's not even that a sound is too loud as much as if it's unexpected.  Where another kids might jump, Katie's whole body convulses and she's in tears.

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.

Oh the Tantrums!

Katie's tantrums were so severe that I felt like we were walking around on egg shells all the time trying not to set her off..  While we lived with my mom she couldn't stand to listen to Katie carry on and on, so she often insisted we appease Kate one way or another just to get her to settle down and shut up.  This, of course, goes against the #1 rule of parenting: consistency.  We moved into our own apartment in March 2008, and I thought I would finally be able to teach and use time-outs consistently, but Katie did not embrace this concept.

My first intention was that Katie take her time-out in her bedroom.  But this only seems to fuel the fire.  She had too much separation anxiety to let me out of her sight, and refused to stay in her room no matter how many times I bring her back.  And this was new to her, so maybe I need to start smaller.

So I select a chair in the dining room, where she can see me.  Yes, I'll have to hear it, but I figure I can handle that until she gets the hang of it and can be moved into her room.  No such luck.  She firmly refuses to stay in the chair even for a few seconds.  Even if I am very calm and casual about it, suggesting she just "take a little break" before things have even escalated.  The whole idea of being deprived of my attention during that time is completely defeated by my repeatedly having to pick her up and place her back on the chair.  So, back to the bedroom it is.

When Melanie went through a few weeks of struggles at bedtime my husband installed a hook on the outside of her bedroom door so we could lock it to keep her from coming out. (This should only be done if someone can stay right there to monitor the situation at all times.)  But now we lived in an apartment and it might be misunderstood if we installed such a lock here.  So I had to stand outside and hold the door shut instead, playing tug of war silently so she would think it was simply locked.

Excerpt from journal entry of Aug 2008: " Last night was awful when Rob brought the girls back home.  Katie hadn't had a nap, of course, and was hungry.  For the life of me I can't even remember what started the trouble, but she threw a huge fit.  So I took her to her room, but she wouldn't stay in it, so I had to shut the door and hold it for 40 minutes while she raged. It was AWFUL!  I sat outside the door crying, because she sounded so sad and hurting, but I couldn't back down and let her win the battle, even though all I wanted to do was hold her.  At one point I weakened and opened the door and offered to hold her to help her calm down, but she refused and I had to shut the door again and keep waiting it out.  I knew she was so tired and conflicted after being at Rob's for the weekend, and she just kept screaming 'I want you! Mommy I want you!' and 'I can't breathe! I can't stop'!'  So I finally gave in even before she settled down because it was breaking my heart.  At that point it didn't feel like she was being willful anymore, it just seemed like chaos.  She let me hold her for a little while then, and I rocked her and took deep breaths for her to hear, though she refused to do them with me."

I remember asking a professor later that week if he though it was possible that she really couldn't calm herself down, or if she just knew it would get my sympathy.  He smiled as he told me I was being played.  I still wasn't so sure.
(Of course, now I know that it was and is possible that she couldn't control her reactions.  The professor meant well, and in most circumstances would probably be right, but this is just one example of how SPD is not commonly known in psychology/therapy circles yet!)

One and a Half

Uneasy walking on lumpy spring grass

At 18 mo. I noted that Katie was no longer using some of the words I thought I had heard her saying before.  She only had about a dozen words she used regularly.  She did finally learn and use 5 of the baby signs, but only when prompted.  As the weather warmed I noticed that she was afraid to walk in the soft sand at the park and in lumpy grass, she would just freeze and scream for help. 

Not unlike other toddlers, she did not handle the word "no" well, she became "pissed off" at the drop of a hat and took over 20+ minutes to be settled down.  She would scream herself silly, thrash around and throw things.  I knew all the right things parents are supposed to do with toddlers, limit setting, distraction, time outs, and above all consistency. I wanted to be able to teach time outs for unacceptable behavior, but the only safe place to enforce them was in her crib, and I didn't want her bed associated with punishment. So then what?  My precious, perfect Melanie had never done anything like this.  What on earth was going on?