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 did 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.

Swimmin' Like A Fish

Another huge improvement this summer is Katie's confidence in swimming.  My mother has a pool at her apartment and the girls have gone swimming with her a few times without me, and suddenly almost all of Kate's clinging anxiety in the water is gone!  She like to wear arm floaties, but says she doesn't need the swim vests anymore.  In Grandma's pool she will swim the entire length down to the 6' mark and back (of course I always stay close when she goes that deep).  She has been attempting to float on her back, though that is still pretty scary when her head actually hits the water, but she tries!  For the past several years she has always insisted that I actually hold her whenever we were in the water, or that she at least hold onto one of my arms the whole time. 

Last time we were at Grandma's pool with all the cousins I was bouncing Kate up in the air a little, in and out of the water, when I accidentally threw her a little too high and she went under when she came back down (though only for a second, as I pulled her right back up).  It startled her, of course, but she didn't freak out or cry as she surely would have before.  She was actually pretty proud of it and wanted to know if everyone had seen it!  She nervously allowed me to do it two more times to show Grandma and an Aunt.

Our apartment complex has a pool as well and this summer is the first I've been able to take the girls and let them play in it without having to be in it with them.  They both stay safely in the 3' end and just sort of bob around. Katie is even willing to forgo the floaties in our pool now and is very proud of being able to walk around all on her own,  especially since big sister Melanie refuses to.  It is so nice to be able to just supervise their water play without having to be Katie's anchor the whole time anymore!

Catching up to date

Wow, it's been way too long between posts!  We were without internet for the whole month of June and then had out-of-state family visiting for a week, and now it seems July has almost gotten away from me as well!  We've been having a pretty good summer.  Quite a difference from our struggles last year and the memory of the bad times are already fading.

This is the first year Katie has had the coordination to pedal her bike!  Until now she would only sit on her tricycle and push it with her feet on the ground, like a young toddler does. Now she's outgrown the tricycle and moved up to her sister's 2-wheeler (with training wheels).

She is still rather nervous getting on and off, as it is unstable and wobbly, and she  insists that I hold on to her or the handle bar to help her feel steady at first, but after she has ridden for a while she feels confident enough to go on her own.  We don't really have a very good area for her to ride at our apartments, just the parking lot and garage area, which are incredibly uneven.  So she has a hard time keeping herself going sometimes, and once she loses her initial momentum it is hard for her restart, lots of frustration, but also lots of pride!  She really took off when we took the bike to my sister's house with a nice long, even sidewalk! As I write this I'm feeling a bit guilty because she was really making progress, but now she hasn't ridden for several weeks.  I'll have to get her back out there because she was really enjoying the confidence it gave her.

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.

Distracted by nature...

Katie to me last Saturday when it was so gorgeous out: "Momma, sometimes, only on nice days, I just get so distracted by nature."

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. 

Earring Issues

My poor baby!  Katie woke up this morning telling me her right earring was 'bothering' her when she tried to turn it.  I had a look and was horrified to see that she had pushed the back on so tightly that it had dug into the skin and was bloodily encrusted to it.  Checked the other ear and it was the same so I insisted we take them both out immediately, which was quite traumatic and, I'm sure, painful, as they both look like they could be a bit infected.  Cleaned them out well with peroxide and applied Neosporin liberally to keep the backs soft.  

Feeling like an awful mother for letting this happen, though, how could I have known?  Why on earth didn't she say something sooner!! I can't go even a few minutes with an earring back too tight without adjusting it, how did she keep quiet?  Usually she is more than vocal about every little hint of discomfort!  Only explanation I can think of is inadequate tactile input, like she literally didn't feel it the way others would.  Poor thing.

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.

Perfectionism

There are some of Katie's struggles that  I find hard to connect to the SPD, and this is one of them.  One of the reasons I still wonder if I shouldn't have her in for further evaluation somewhere.  So, other professionals reading this, let me know what you think.

Katelyn sometimes holds herself to a very high standard of perfection on certain tasks, and then completely loses it if/when she makes a mistake.  Take valentines, for instance.  Katie was so excited to pick out cards for her first valentine's exchange, and the day the class list came home she sat down immediately to begin writing in the names.  Katie actually has quite good handwriting for kindergarten, and for a child with SPD, whose fine motor skills are often poor.  But, inevitably, she would get the first few letters too big and not have room for a last letter, or decided a certain letter didn't look the way it should, and her world was fit to end right then and there.  Wailing and gnashing of teeth ensued.  She'd throw down the pen and scatter the cards, crying that it was "all ruined now" and she'd "never do this right, never!".  Thank goodness we had more cards than we needed, because she could not be convinced that any of the mistakes were salvageable with a little correction, but had to start over on them completely after a good 30+ minute cooling off period.

Same sort of reaction last week when she drew pictures for her dad, step-mom and step-brothers to take to them when they went for the weekend.  She made one for each, though they were not as elaborate as some of her usual drawings, and sure enough on the last one there was a spelling mishap!  Tears, tearing and crumpling of the offending paper ensued before she could be calmed and induced to try again, but then she'd lost the marker she'd been using, and none of the other colors would do, as they would not match, so she melted into a puddle again!  Good old Melanie finally found the original color, and all was sorted in the end for delivery the next morning.  But, about half an hour into our drive up north there is an ear piercing screech from the back seat, the cause of which cannot be immediately deciphered through all the crying, but turns out to be that she has somehow forgotten one of the pictures at home and it is an inconsolable loss.  We remedy the situation with a quick stop at the nearest store for paper and markers, and the universe is in balance again, after a few more stifled sobs.

I don't know why she is so hard on herself this way sometimes, but it is the most heartbreaking thing you'd ever want to see.  The level of anxiety she lives with on a daily basis is just so much higher than most kids her age, and I don't know how to help her.

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....

Symptoms- Frequently asks people to be quiet; i.e., stop making noise, talking or singing. Appears to "make noise for noise's sake".

Here she can be such a contradiction.  She does ask us to be quiet a lot.  She cannot stand either me or Melanie singing, though we're not really any worse than anyone else.  And sometimes she's just in a snit and can't even stand to hear us talk.  Her play with her baby dolls frequently involves the whole household needing to adhere to a strict silence so her "baby" can "sleep", and breaches of this order can result in reactions equal to that of mothers of colicy infants in similar situations.

On the other hand, she makes so much noise herself that I sometimes fear I'll lose my mind!  She has not really ever learned to whisper, and has none of the usual social inhibition that others naturally feel in quieter environments.  She loves musical instruments and what she lacks in skill with them she makes up for in gusto and persistence.

It's one of the ironies of SPD that the very stimulation they cannot stand from the outside, they often can't get enough of if they create it themselves.  It seems like they're experimenting with that type of stimuli in ways that feels safe because they are controlling it.  It's also known that sensory disregulation often means that they don't experience the same stimuli the same way every time.  What is too loud today may seem too soft to hear tomorrow.  That's what's so stressful for these kids, their world is completely unpredictable!

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.

Occupational Therapy Evaluation

I don't remember what finally made me pick up the phone and make the initial appointment for the OT evaluation, but it wasn't automatic, I think I still didn't understand what difference the therapy would make.  But eventually we got in to a rehab clinic in Maple Grove and met our therapist, whose name also happened to be Katie, and was therefore dubbed  "the Katie-lady". This initial evaluation was in January 2010.

Regarding Kate's behavior during initial evaluation the therapist's reports states "Short attention span.  Constant movement, difficulty to engage in structured activities.  Patient needed movement breaks to sustain attention to tasks."

Regarding motor skills, the report noted that Katie "used compensatory movements to maintain balance" on one foot at a time, indicating "likely poor core/ upper body strength" and that her manual dexterity tested below average. "She is lacking both strength and coordination in her hands and fingers which is limiting her independence with dressing tasks." 

Regarding visual-motor integration, Kate's visual perception tested in only the 6th percentile, and motor control only in the 19th, indicating "Katie demonstrates significant delay in fine motor integration skills.  She is lacking in visual perception as well as motor coordination.  She also appears to have weak hands which would limit her coordination skills."  It was noted that she used a "thumb-wrap" grasp for writing, which "offers more stability and is often used by children with weak hand muscles."

The Sensory Profile questionnaire I filled out indicated a definite difference in Kate's Auditory, Touch and Vestibular processing, as well as in her Emotional/Social responses, the Behavioral outcomes of sensory processing, Emotional Reactivity and Sensory Sensitivity, with most of her scores in these areas only half of the average.  The report states, "These sensory processing issues also affect her ability to get along and play with peers as she has the need to always be in control of her environment so as to limit unexpected noise and touch.  These issues also affect her ability to attend, learn and improve her fine motor skills."

Based on this evaluation, treatment goals were set as follows: 

-Katie would engage in upper extremity strength activities 3 minutes without fatigue

- would demonstrate appropriate tripod grasp on pencil without adaptive equipment

- would demonstrate age appropriate motor control by completing a certain type of maze

- would be able to attend to therapist directed activity at the table for 5 minutes

- would be able to follow directions to complete a 3 step obstacle course, after demonstration

I realize a lot of this specific information may not mean much to many of you readers, but I included it for those of you like me who are curious about such things, for any professionals who may understand such details, and for any parents considering such an evaluation to see one example of what results this type of evaluation will provide.

Grooming Groans

From infancy Katie had a serious aversion to having her nails trimmed.  (Probably not helped at all by the time I cut a huge chunk out of the tip of her finger while she was flailing around trying to elude me, poor thing!)  At first I thought it was just because her little infant nail beds were a little irregular, and they'd get better as she grew.  But it didn't, she continued to scream like I was taking off the fingers (or toes) themselves.  I started having to clip them while she was asleep.

Combing/brushing hair was much the same.  Thank goodness she was so bald for so long, because as soon as there was anything to comb out it was like torture.  She wanted to have long "princess" hair, but couldn't stand for me to touch it.  As mentioned in the post about bathing,  she absolutely could not cope with having her hair washed either, so her scalp got a thick brown waxy build up all over it.  It was truly disgusting and embarrassing.

She never had a real haircut at a salon until she was almost 4, because I knew she'd flip out if anyone tried to come near her head.  We finally managed it by going to Kid's Cuts, where she could be pampered and distracted by movies.  Shampooing there, of course, was out of the question, as was the noisy hair dryer.  But all in all we managed without too many tears.  She still cries every morning when I brush out her hair, and though her fingernails aren't so sensitive anymore, she still swears it hurts when I have to do her toes.

Bathing Battles

In her journal I wrote that Katie enjoyed water play throughout the summer before her second birthday.  I can't remember when or how things started to go south, but within in a few months bath time became an all out war.   Katie developed an intense dread of bathing, an abject terror of the water or even the suggestion of it.  I wondered if something traumatic happened at their dad's house to cause the sheer terror, but I never heard of anything.

When bath time came around Kate would absolutely LOSE IT!  I always ran the water before she came into the bathroom to avoid the rushing water being loud and frightening, and I never filled it very full at all.  But the minute Kate saw the tub she just freaked out.  As I lifted her over the edge of the tub she'd pull her legs all the way up to her body in a tiny ball to avoid any part of her touching the water.  She'd cling to me, scratching and clawing and trying to climb out of the tub, screaming frantically for her life. It was unbelievable!  Heartbreaking!  As if I was dropping her into acid or boiling water!  My ears would ring for half an hour after it was over.  And it took her almost that long to recover from the sobbing and hyperventilating.

Thankfully Katie had very little hair, so it didn't need frequent shampooing.  I resorted to basically just giving her sponge baths, saving tub baths for rare occasions.  When we moved to our apartment I hoped maybe things might be a bit better, (maybe Mom's bathroom had something to do with the terror?) but no such luck.  Every time I gave her a bath I feared a knock on the door from child services, imaging what it must sound like to the neighbors.  Gradually, the terror of the water itself ebbed, as long as I kept it very shallow, but shampooing continued to be a nightmare.  She developed horrible cradle cap because I just could not wash her hair frequently enough or well enough.  It became really disgusting and embarrassing.

Potty Training

Melanie was fully potty trained by 20 months.  I knew kids each had their own time schedules so I didn't put any pressure on Kate, but she got interested fairly early just from observing Melanie use the bathroom.  We got her an Elmo potty that said encouraging phrases when she sat (in English & Spanish!) and she liked it at first, sitting on it all the time, in her clothes.  But she did not like to sit without her diaper on, so that was a bit problematic, though I just let it go, figuring she'd get around to it eventually.  We moved into our own apartment and got a special child seat that could sit on the regular toilet seat since she wanted to be a big girl.  But she refused to use it or the Elmo seat anymore.

She was now able to come tell me when her diaper was wet or dirty and insisted on being changed immediately, but still refused to sit on either potty.  She became familiar with her body's signals and would go in a corner to hide while having bowel movements, but refused to come do it in the bathroom.  We got an Elmo Uses the Potty DVD, which she loved, but no inspiration.  I recognized that she was a very willful child, so I just let it be and never put any pressure on her, knowing she would just dig in her heels if I did.

Her 3rd birthday came and went, and about a week later she walked up and told me she didn't need diapers anymore, because she was a big girl now.  I seized the moment and took her straight to her dresser to pick out a pair of her pretty new princess panties which had been waiting there for her.  She picked out Sleeping Beauty, her absolute favorite and "best friend" at the time, and was extremely cautious the rest of the day to keep Aurora from getting wet. Those first 2-3 days, we set a system by which she got to have a Skittle every time she sat on the potty (to encourage trying) and another one if she actually went.  She knew enough to stop her urine flow after a little dribble, wipe and leave the bathroom, claiming her Skittle, and then come back in 15 minutes to do it again!  She only had one accident that day, and only one the next, and was through with diapers just like that!

Stubborn little dickens!  Her ability to work the system for as much candy as possible proved she was more than capable of controlling things and must have been for a while, she just didn't want to be bothered until she was good and ready!

Early morning blowup

Rough start this morning  for seemingly no reason.

Katie has been sleeping in my bed for a couple weeks now since she was really sick and fussing all night.  Then, once she was better, she continued to want to sleep in my bed, and actually goes to bed voluntarily and stays in the bed in there, so I've let her stay rather than have our nightly battles.  She's easy to sleep with because she doesn't like to be touched in her sleep (and neither do I!) so she stays as far away from me as physically possible, so it's almost like she's not even there.  Poor Melanie is jealous, as she likes to snuggle and always wants to sleep with me,  but she is very clingy at night, and thrashes and kicks so I get no sleep!  Trying to point out to her that at least this way it's like she has her own bedroom.

Anyhoo- with the brighter light in the mornings, Kate's been waking plenty early (6:30-7:00 instead of 8:00 or later).  6:50 this morning she decided she wanted the Kid's Cuisine frozen meal she had refused last night.  I, however, was not willing to make said meal for breakfast and told her she could have it for dinner.  This was highly objectionable to Katie and she absolutely lost it!  She sat on the bed and screamed at the top of her lungs!  "I want it! I want it! I want it!'  and just plain all-out blood curdling scream.  I picked her up and placed her in the hall, telling her she could not be in my bed if she chose to act that way.  So she screamed even more forcefully, as I closed my eyes to pretend to ignore her.

In a few seconds she gave up on impressing me and went into the other room to scream at Melanie, hoping to get a reaction I'd have to respond to.  Mel did well though and didn't get sucked in (way to go baby!) and pretty soon Kate was back in my room, complaining that she just could not stop crying, which I did not fall for, and eventually asking me not to say anything if/when she calmed herself down.  This is quite an improvement from a year ago at this time when she would have carried this fit on for an hour or more.  Sucks that it happens at all, and in the moment my eardrums were about to burst it felt like an eternity, but she is finally learning to calm down on her own in a comparably short time.

This is one of the incidents where I can't see a clear connection to the SPD, she shouldn't have been overwhelmed first thing in the morning.  These incidents still make me think there might be something more underlying the SPD, and still shake my self confidence as a parent, wondering if she really is a brat too.  Believe me, I don't have all the answers yet, this blog is about my ongoing journey.

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!)

Child psych 101

I'm trained in, and a firm believer in, a parenting program call Parenting With Love & Logic.  Three keys parts of its philosophy are:
1) Insisting that children own their own problems and don't make them a problem for anyone else.  Therefore, my child has the right to be upset about something, that's ok, it's her problem; but if I then have to listen to her crying and screaming, she's creating a problem for me, which is not ok.
2) I try not to give orders I can't enforce, because if/when the child refuses, my words mean nothing and I lose all credibility.
3) Tantrums, and many other misbehaviors, are usually a bid for attention, or a means of manipulation, which if even occasionally successful, will be used again, and again, and again, and again.
This is very sound theory and, when applied appropriately, should work with most kids.

So, I don't tell my child not to have a fit (because I can't control that, and it will certainly backfire), I tell her where she needs to be if she chooses to have the fit, namely away from me, where it won't hassle my ears and will not be awarded attention.  In her room.

Love & Logic suggests asking the child if she will need the door open or closed, theorizing that the child who feels in control of this option will be less likely to resist it.  If the child shows by his behavior that he cannot handle having the door open, we show that we read his signs by closing it for him.  Some kids will actually leave the door alone.  Some will test the parent by peeking out, but give up when they see the parent patiently waiting outside.  The whole idea is for the child to eventually learn "If I choose unacceptable behavior, I will have to spend time alone in my room. That's not very much fun and I may miss out on something".  Later, when warned, the child will decide to change their behavior instead,  or if time-out is necessary, they have time to calm down before rejoining the family.  As long as parents make sure the behavior doesn't pays off for the child, he'll soon give it up as useless.

But what if she doesn't?  What if you do everything 'right' and it only makes it worse?  'The child is stubborn, don't give in, be consistent.'  Ok, but where do you draw the line?

Finally, a clue!

I started graduate school in Spring 2008 in a Master's program for Clinical Counseling, working toward licensure as a Marriage and Family Therapist.

In January 2009 I was taking a course on child development in which we had a guest speaker come and talk to us about something called Sensory Processing Disorder.  She was an occupational therapist, and worked with children struggling with these issues.  As I listened to her presentation I became very excited.  This sounded like Katie!  Could this be the answer I'd been looking for?  I had to know more.

I purchased and read The Out-Of-Sync Child by Carol Kranowitz (highly recommended!) and came to realize that both of my girls had sensory issues, though Melanie's were much more mild, and I myself had these issues as well, and had never known it.  I had always been "picky" about certain things, but had never understood there could be a reason.

Consulting a professional

Ok, so I realize I was getting way too detailed about all the early development stuff.  The idea was to point out the early indicators of her sensory issues, but I think it was getting awfully boring.  So, let's get to the point, right?

Katie's 3rd birthday, overwhelmed.

So the point was, Katie became a real little handful, and I was at a loss to know what to do about it.  I felt like a fool, because this is supposed to be my field, my area of knowledge, and I was failing miserably.  I took Katie to a child psychologist the week after her 3rd birthday, and we saw her for a few months, but she couldn't pinpoint any particular diagnosis that fit either. She mentioned a referral for an occupational therapy assessment, but I guess I sort of brushed that off, as I didn't really understand what that had to do with anything.

Sometimes I wondered if this problem was all in my head.  Maybe this was just Kate's personality.  Maybe I was just dropping the ball as a single parent.  Rob never seemed to have these sort of issues with her behavior. Maybe I was just too easy on her and needed to get tough.  Maybe I was just lazy.  Maybe being in this profession I was seeing "symptoms" were there really were none.  Maybe.  But I just didn't think so.  After all, I wasn't really parenting that much differently than I had with Melanie.  Sure they're different kids, but the same principles should still apply.  Yes, toddlers are difficult, sure they have tantrums, but something about this just seemed over the top.  She was so intense, so over reactive, and she couldn't seem to get over things like a 'normal' kid would.

At the time Kate was having terrible separation anxiety when it was time to go to her father's house for his weekends. Rob had moved in with his girlfriend Mary about a year after leaving our home, and she has two sons of her own.  I'd met Mary and she seemed to really care for the girls, and her sons were both very sweet to them.  But each week Katie would cry all through the drive up there, and then clung to me screaming when I tried to hand her to Rob.  I eventually insisted on him getting her out of the car seat himself so she couldn't get a hold of me.  I cried every time as I drove away.  It was torture!

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?

Split personality

In one journal entry I wrote that Katie sometimes seemed like she had a split personality, being adorable one moment and seemingly possessed by demons the next.  Christmas 2006 was one clear example of this.  Katie was so excited!  She couldn't know what to expect, but she could tell it was exciting.  She stood in the center of the living room and spun around and around in circles, over and over and over.  But within minutes of the family arriving she did a complete 180 and was a major grump for the rest of the day.  I never did get a decent picture of her without the scowl.  (see photo)

First Steps

Katie has loved Sesame Street characters since she developed a fascination with them on a mobile at the day care center.  Big Bird seemed to be her favorite.  For her first birthday I got her a little red furry Elmo armchair that jiggled and giggled when she sat in it.  Though she adored Elmo, she seemed to prefer to stand up to it rather than sit in it and make it wiggle.

Katelyn was frustrated with her limited mobility for a long time before she finally started walking at 15 mo.  She learned to sign "Help", but refused to do any of the others.  She had a very short anger fuse and screamed for help at the slightest frustration.

Around One Year

Katie loved playing in the water that first summer!  While Melly was leery of any splashing, Katie seemed not to notice getting water in her face, even putting her face in deliberately.  She loved music too, and would get very angry at her musical toys if they did not play.

Oh that temper!  She developed an earsplitting screech that she used constantly to express her displeasure with everything!  In the journal I describe her as stubborn and willful.  She was twisting and fighting with me when I tried to dress or change her.  She began having a hard time going back to sleep after waking in the night, refusing to lay down and self soothe.  Grandma didn't help matters when she snuck down to rock-a-bye her in the middle of the night, inadvertently teaching her to expect to get her way at any hour.

Still loving the swing, she learned to twist herself up (like on a tire swing) and then let go, spinning around and around.  She did the same thing on the floor too, sitting on her bottom and turning herself around and around with her feet.  Katie and Melanie were both devoted pacifier suckers, and around this time Katie started insisting on having one to hold onto as well as the one she sucked.  I had tried to teach Katie the same baby signs Melanie had used so well, but she had only ever used "more" and "all done", and about this time she refused to use even those anymore.

That fall I gave up my job at the day care since it was too far away for us living in the Cities and I needed something closer to full time.  I started working 30 hrs a week and Katie went to a home day care, which she enjoyed, but was always in a hurry to leave when I came to get her and couldn't stand for me to visit with the provider for even a few minutes!

Swinging & Spinning ! Hooray! - June/July 2006

Katelyn absolutely LOVED her Johnny-Jump-Up swing!  (You know, one of those suspended seat swings you hang from a doorway.)  She could not seem to get enough!  But then, quite suddenly, when she'd had enough, she'd really had enough and had to get out of that thing immediately!

Melly and Kate w/Daddy - July 4, 2006

Noisy toys suddenly could not be noisy enough either.  She loved one rattle in particular that was much louder than all the rest, and became very upset at day care if she saw another baby playing with the rattle there that was identical to ours.  She was voicing a lot of frustration with her quick temper and loudly demanded help immediately.  She wasn't babbling much, but would say "Mom!" quite forcefully when angry.  She was slow using her legs and got around just pulling herself by her arms for a long time.  Her first 4th of July she watched the fireworks calmly, while Melanie covered her ears.

Develpoment: 8 mo. and on

Katie continued to be a happy baby at home.  She learned to purposely throw herself on her face to get from a sitting to laying down position.  She LOVED music, especially the intensity of worship at church, getting her arms and legs moving madly.  The rest of the service was difficult though, as she was constantly trying to touch the people in front of us.

The tone of my entries in her journal first changed at 9 mo., when I wrote "what am I to do with such a girl?", noting that she'd been very fussy and irritable, possibly frustrated by her immobility?? (she wasn't crawling yet).  She had a "budding little temper", clenching things and turning red in frustration, crying at the top of her voice.  She began to shriek at dropped toys or when she ran out of food.  We couldn't seem to feed her fast enough.  She would grab the spoon away from me after a few bites and try to do it herself, but them scream when she couldn't do it. 

Rob's visits were rather sporadic at the time, and I noted that Kate shied from him and tried to bury her face in my neck when she saw him.  She didn't begin spending overnights with him until she was at least a year old, as I was concerned that so much change would be hard on her.

Separation and Divorce- March 2006

After 10 years of marriage, my husband Rob decided to leave and moved out of the house.  Our relationship had been rocky all along, but I'd stuck through it, believing it was God's will for marriages to be worked out, and knowing how important a strong family base was for our children. We'd been to marriage therapy two different times over the years, but with little result.  We never fought, and as far as I knew he was content with things the way they were, so his leaving came as a surprise.

Because of his crazy work schedule, the girls hadn't seen Rob for days at a time anyway, so his absence was not as severe a change as it might have been.  My family was all in the Minneapolis area, so we moved in with my mother to be closer to their help and support until I could get settled again.

Natural Development: First 7 months

There really wasn't anything very unusual about Katie as a baby.  My memory of detail here is aided by the baby journal I kept.

At 2 wks. I noted that she had a "sweet and even temperament", hardly ever cried, and when she did Melanie covered her ears and ran away, or cried as well if she couldn't escape.

At 2 mo. she was overwhelmed/upset by the music and lights bar that dangled over her bouncy seat, so I removed it for the time being.  She adored her Daddy, chattering and cooing at him, but no one else.  She was easily upset by anything that made a lot of noise, which was hard for poor Melanie who tried to interact with her by rattling toys and things at her, which just made Katie cry, and poor Mel feel rejected. 

Both of my girls preferred the more upright position of sleeping in their car seat rather than flat in their cribs for several months.  Both girls were breast fed, but Katie seemed to have a harder time with it.  My supply just didn't seem to be able to meet her demands, so I began supplementing her diet with formula as well.  At 5 mo. I noted that she has having problems with constipation with the increased use of the formula. 

At 6 mo. I noted that she was a voracious eater, was very upset by the crying of the other babies at the day care, which kept her from sleeping there. She was "a happy little honey" at home, but was having terrible stranger anxiety if anyone even looked at her.

Kate couldn't sit up independently as early as Melanie had, and at 7 mo. I noted that she "tried to sit, but fell on her face and got very angry".  She had seemed to get over the stranger anxiety quite suddenly.  She was babbling a lot of B consonant sounds, but otherwise just throaty noises.  When I tried introducing finger foods she gagged on everything and became panic-y.

From the beginning

In the interest of making this as complete a picture as possible, I'm going to start at the very beginning.

My first daughter, Melanie, the love of my life, changed my world forever when she was born, after a torturous 24 hours of labor, in August 2001.  As so many parents will tell you, I had never known I could love anyone so much.  She was a darling, an angel, the sweetest and easiest baby in the world.

She had an impressive vocabulary early on and also learned to sign a lot of words before she could say them.  I LOVED signing with Melanie because it gave her the ability to tell me what she was thinking long before the words would come, allowing me to better meet her needs and share in her little world.  Family and friends learned her signs too, and I cannot overstress how this eased so much frustration in those early years.  We were all so impressed with what an easy going little girl Melanie was.

I left my job as a school based social worker when Melly was born, and took a part-time job at a day care center where she could come with me, though she was in the Infant room, while I worked with Toddlers.  That first day I could hardly stand her being out of my sight, couldn't stand the idea of someone else trying to take care of her who didn't know her the way I did.  I wanted to grab my baby and run!

But I didn't, and we got used to it.  When Melly grew into the Toddler room I picked up full time hours and we spent all day, every day together.  During this time my husband, Rob, was training to become, and then working as, an EMT,  which involved very irregular hours, so Melly and I were often home alone.  She was my world.


Around 2 years old Melanie became obsessed with wanting a baby sister.  She would burst into tears, begging me to give her one.  Rob and I had always planned on two kids.  My first sister and I are 3 years apart, and I'd always thought I'd like that spacing for my children, plus, a good friend at the center was pregnant and it was giving me that baby itch,  so we decided we'd see what we could do about giving Melly the baby she so wanted.

Heavy pregnancy in the summer months had been awful the first time around, so  I calculated carefully to avoid repeating the same experience, also avoiding the time that would make the baby due around Christmas. Melanie had come along as a welcome surprise, but things were not so easy this time.  Months went by, and after a year without results I became less picky about timing and began a course of fertility boosting medication.

We should have bought stock in pregnancy tests that year.  I took so many and was disappointed so many times.  Every woman in my church seemed to be pregnant but me, and with history of endometriosis in the family I wondered if God would ever answer my prayer.  Still, I had one perfect child already, I told my self, it could be much worse.  Side effects of the fertility medication were intolerable so that was dropped.  And we waited, and I prayed.

New Year's Day 2005 we spent with family, and I was back home alone, while Rob was off to work, when the latest pee-stick finally had a + instead of a --.  I was ecstatic! I called everyone immediately, not even waiting to see the doctor first.  I was not nearly as sick this time as I had been with Melly, and this baby was crazy active, sometimes seeming like almost having seizures the movement was so fast, so I was sure it was a boy.  Ultrasound at 20 weeks proved me wrong.

My water broke at home in the early hours of August 26th, and my mom arrived at our house in a severe thunderstorm to stay with Melanie, who had gone to bed the night before with an unexplained fever.  Getting checked into the hospital and into bed I remember crying because I had not had a chance to say goodbye to Melly, and this exciting moment of Mommy leaving for the hospital that she'd waited so long for was happening without her.

I worried that whatever illness was causing Mel's fever would keep her from being able to come see the baby as soon as she was born, and cried because the plan we had rehearsed and anticipated so excitedly would have to be changed.  I cried because she might really be sick and I couldn't take care of her. She might have to be kept away from me and the baby for a few days, when all I wanted was to share this with her.  And even then, the baby's needs were going to have to come first most of the time and my poor little Melly wouldn't be able to have me when she wanted me and, Oh, how could I be doing this to her!

Katelyn Rose arrived after a fairly routine delivery.  Since Rob, as an EMT had been trained for emergency delivery of babies, but had not yet ever done it, the doc stepped aside near the end and supervised Rob in the actual delivery.  The look on his face was priceless.  Compared to her 9 lb. big sister, at two weeks early,  6 lb. Katelyn was tiny, but perfectly healthy.  Melly was not allowed to come that first day, but came to seen her the next day, wearing a surgical mask for protection.  She was excited about the attention, but not all that interested in baby Katelyn herself.