sensory surprises

a book reading marathon just transpired...

Sun, 18 Oct 2009 22:14:00 -0400

i just had one of those miracle moments of parenthood. yowza.

it has been just about 9 weeks since the first speech therapy appointment where i saw my kid sit still for an entire book for the first time. that was huge for all of us, and we’ve made a point of keeping up the momentum since then. it seems that therapy consumes most of our awake time in one form or another, so moments like these make it all worthwhile.

recently, my dear friend at work suggested that we pick up one or two (or three) of the “dinosaur books” - a favorite of her kids, and books that fit the sing-songy pattern that keep the kidbot’s fidgets at bay.

and besides, who am i to say no to an amazon package in the mail?

as predicted, the kidbot LOVES them. observe:

(yup. that’s him reading How Do Dinosaurs Go To School? on his trampoline.)

so the kidbot quickly shifted his interests from the bear series to the dinosaurs series (i bought the box set) at the drop of a hat. that being said, while he will sit still for a book now and then and will flip through one on his own from time to time, he still doesn’t really qualify as the scholarly type.

that is… up until an hour or so ago.

he just asked me to read three dinosaur books IN A ROW - and then he proceeded to read (recite, really) the brown bear book. that’s four books, people.

i’m expecting him to write a book before bedtime at this rate. perhaps i can convince him to take up nanowrimo this year?

dream a little dream

Sun, 18 Oct 2009 21:31:00 -0400

i’ve spent almost the entire weekend trying to rack my brain for something to write about, and then i suddenly remembered wednesday morning. it’s amazing how quickly we forget. but i digress… wednesday morning was a rare morning because the husbot and i had a few mutual minutes of downtime together before the chaos of the day begins.

he was making scrambled eggs, and i was sitting across the counter. we were discussing the kidbot’s sleeping habits as he had wandered into our bedroom at about 2am. too tired to discuss or inquire, i just moved over and he snuggled in. this is certainly not a behaviour that i’d like to cultivate, and being tired was a sorry excuse to let it happen. slippery slope and all that.

additionally, i was curious as to why the kidbot wandered in, and i asked the husbot if he thought it was due to a bad dream. at this point, the kidbot wandered over said “dream? yeah.” and so it began.

he told us about the fact that he was riding his bicycle INSIDE (the emphasis, his, not mine) but that the walls kept closing in, and he was being chased by doggies “SNAP SNAP SNAP!” (complete with hand gestures) and that he needed to press the BIG RED BUTTON! and…. it was SCARY…

i think you could have picked the jaws of both the husbot and i up off of the floor at this point.

there are three things that are remarkable about this whole scene…

1) he was listening to and comprehending a conversation that he was not a part of, and felt the need to come over and participate. this is a first.

2) he told us a whole story… an intelligible, well-crafted, and multi-part story that included complete sentences, an expression of his feelings about what happened.

3) my kid has a crazy awesome imagination.

SPD parenting fail

Sat, 17 Oct 2009 00:13:54 -0400

some parents fret when they can’t find the beloved teddy bear or blanket. no, no. not me. i managed to lose the ‘brush and squish’ brush.

as we do it in intervals every couple of hours, i know it’s here somewhere. it can’t have gone far. in fact, it should be right here in this room as i type, damnit.

but alas, it was nowhere to be found for pre-bed decompression, so i improvised. i used one of the nubby/spiky rubber sensory balls that live in the kidbot’s house of primary colored ball pit wonder.

thankfully there was much giggling. but what to do tomorrow for the inevitable post-6-am wake-up brush and squish?

heaven sent: weighted blanket

Sun, 11 Oct 2009 14:59:06 -0400

so… quick back story. the kidbot has always been this strange combination of being an AWESOME sleeper, and a HORRIBLE sleeper - both at the same time.

my kid is famous for once putting himself down for a nap when his grandpa was babysitting. he just grabbed his blanket and went to his room. he has never cried at bedtime. he, to this day, has been known to take luxurious 3 hour naps in the middle of the day. all of these things = awesome sleeper. i know parents who would KILL for many of these qualities.

now for the dark side.

once in bed (doesn’t matter if it was day or night), the kidbot would often wake up within the first 40-50 minutes, and then about every hour after that for the next two (spilling into adult sleep time). sometimes he could get himself back to sleep. sometimes he would scream and cry inconsolably and kick the wall. it was an event 3-4 times a week.

you could NEVER wake him up early from naptime unless you wanted an hour long tantrum and a devil of a kid the rest of the day.

and… the one that nearly killed me… it was an 80% likelihood that he would be up by 5:30am regardless of bedtime, lack of or shortened nap, etc. although we had some luck getting him to stay in bed a bit longer thanks to a good night lite, it wasn’t the fix we really needed. so while my kid would go to sleep (a gift) we never felt like a well rested family. we were always in massive sleep deficit.

the happy ending? once we had even a suspected SPD diagnosis, I started researching sleep and bought a 7lb weighted blanket from cozy calm.

while we do not have a perfect track record - we have 7am wake ups twice a week now. he wakes up in the middle of the night only if i’m talking on the phone loudly (bad mom), or if he has a bad dream (which is later in the night, not the pre-midnight episodes). also of note - he LOVES it. sometimes when you put it on him, the kidbot will just close his eyes for a second.

the weighted blanket’s use coincides with his therapy (pre-bed brush & squish for example) - so I’m not 100% sure it’s the just the blanket that is responsible for the change… but boy howdy do i believe it is playing a part.

and more than anything, never underestimate the value of sleep as a key ingredient to a healthy, happy family.

on the topic of tubes & adenoids

Sun, 11 Oct 2009 14:30:13 -0400

it was at his 4-year check up earlier this summer that i finally managed to extract two things from a pediatrician:

1) a referral to an ENT, based on my theory that the kid couldn’t hear well
2) a referral to the OHSU Childhood Development & Rehabilitation Center for his delays.

the second got us to an utterly passive speech therapist who at least gave us a one-on-one referral that led us to our current speech therapist who recognized the signs of SPD and who kicked off the transformation we’ve seen over the last few months.

the first got us surgery.

for those of you followed me on twitter/facebook prior to this blog - you might remember my excitement and trepidation over the kidbot’s ear tubes insertion and adenoid removal surgery this summer. some of you have also asked me whether in light of his SPD diagnosis later, the surgery was a good thing.

when we talked to the ENT after both a physical and hearing exam, she was confident that the fluid in his ears was obstructing his hearing (and thus also playing a key role his speech delay), and that his adenoids were obstructing his breathing (and thus causing sleep apnea, and thus causing attention and behaviour issues due to lack of good sleep.) at the time it sounded like MIRACLE surgery. and despite the worries that come with putting your kid under the knife, i was pretty stoked.

except for the trauma of trying to get a resistant kid to take the meds that would put him to sleep, the surgery was a piece of cake, as was the recovery. the doctor confirmed that there was considerable fluid in both ears, and that his adenoids were “HUGE” - and that we should see immanent improvements. and well, we did in many respects:

a) i’ll never forget the first time i heard him answer Dora the Explorer when she asked a question of the audience. it was about 4 days after the surgery. i was blown away.

b) the kidbot doesn’t snore anymore. (he used to saw logs, in his sleep. it was crazy)

c) the kidbot has not had an ear infection, runny nose, or cough since surgery. after months and months of him always being sick with something, he’s been healthy as a horse save one stomach virus.

these are all awesome things, and I am glad we got the surgery… but in the end, it was not the miracle cure we had all wondered about.

it wasn’t until we started to get help for the SPD that he started to come out of his shell - but certainly the help of the surgery and the progress from the therapy are not completely disconnected. for example, the listening therapy and vestibular work would certainly not be as useful if the kid’s ears were still filled with fluid…

so long story short - i’m glad we got the surgery. it was the right thing to do. but it does make me think about how many kids have problems like the kidbot’s - and how they can so easily go undiagnosed or wrongly diagnosed.

the listening program (TLP); aka voodoo

Sun, 11 Oct 2009 13:46:00 -0400

someone, somewhere just spit coffee on their keyboard from that title. i’m ok with that. as far as i can tell it is a type of therapy that parents either love or found to be a very expensive waste of time. truth be told, we are a week and a half in, and while i find the whole thing to be complete and utter voodoo - voodoo doesn’t exist without a little magic.

here’s the routine: twice daily, for a half an hour at a time, the kidbot wears some of the most expensive headphones known to man. they are essentially musically accurate (no distortion at the high/low end) and the exact opposite of noise-cancelling headphones - they are designed to let sound in. he also wears a little neoprene fanny pack that contains a cd player. (yes, physical media. we had to BUY a CD player. the geek in me just died a little bit.)

the CDs (which we rent from our therapist) consist of classical music, on random, with bits of the music altered… from the program’s own website:

The Listening Program’s psychoacoustically modified music and patent-pending production techniques are designed to stimulate, or “exercise” the different functions of the auditory processing system. This enables the brain to better receive, process, store and utilize the valuable information provided through the varied soundscapes in our lives such as music, language and the environment in which we live.

for you and i - these soundtracks at first just sound fuzzy at parts and unnatural during others, and culminate in making you feel a little bit ill - kind of like wearing your great aunt’s glasses that are coke-bottle thick.

during the listening we do a number of activities that are deemed acceptable - everything from practicing fine motor skills (LEGO, ftw!) to vestibular stimulation (spinning). for example:

(apologies for the whining. he wanted me to spin him fast, not take video)

note that this is AN HOUR A DAY, EVERY DAY. no one said this therapy stuff was going to be easy. it’s time consuming, and the kidbot likes it… most of the time. occasionally we spend the last 10 minutes with him trying to find creative ways to make the headphones just magically fall off. ”OH-Oh! Mama! No more music!”

but, after having a brief plateau in his verbal skills a few weeks back, the listening therapy kickstarted him into more interaction, more complex sentences, and i would argue that his fine motor skills are improving too. this last one is the one that i don’t get.

when we were reading the literature provided by the therapist, they had a case study that showed the writing improvement made by an (older) child who had undergone the therapy. while truth be told, i don’t feel i entirely understand HOW the therapy works in this way (and thus the voodoo), i am pretty excited about the progress that we’ve been seeing.

bad blogger, no cookie

Sun, 04 Oct 2009 23:25:53 -0400

it’s been 2 weeks since my last post. i totally suck. my only explanation is that i fell into a black hole at work, and have just been able to find the energy to feel human, much less inspired to write.

the good news is that work is going exceedingly well. in the past couple of weeks, my little company launched the first two apps that you see on this screen:

(we actually built everything on this screen save Nearby/Obama which were built by my business partner and lead dev prior to small society’s existance, and the last two which were built by my big brother….)

i’m both exceedingly proud and tired. but i have to say… there’s been way too much going on for me to feel like a great mom of a “special needs” or “neuro-atypical” kid. sometimes being a working mom is nothing but a steaming pile of guilt heaped on top of a slice of exhausted pie.

on the up side, and no thanks to my lack of time and attention, we’ve had some major kidbot progress that i hope to outline in detail at a later date (hopefully later this week, rather than next month). these include:

- my son’s first use of sarcasm (the only language i speak)

- we started “the listening program” which is some crazy voodoo magic

- for the first time my son answered me intelligently when i asked him “how was school today?” (ok, so he just shrugged and said “fine” - but seriously, my kid has never answered me before… i’m enamoured with this bit of eloquence!)

a long story short, his language is really starting to evolve, and with it so are his interactions, his personality, and his interest in all things to do with words - including books, music, street signs, and whatnot. he is now so verbose he’s verging on bossy. it’s strangely awesome.

note the kidbot is climbing towards a “rEVOLUTION” …

the art of articulation

Sun, 20 Sep 2009 14:26:00 -0400

one of the things that totally sucks about having a kid with a speech delay is his inability to tell you what’s going on his head. whether it’s that he isn’t feeling good or whether it is what happened at school today, he generally isn’t good at answering any when, where, why or how questions.

i was actually laughing with a co-worker this week that since we started the wilbarger protocol i am starting to go through what most parents go through MUCH, MUCH earlier…

“mama - look at the bird!”
“mama, i spilled, can i have a towel?”
“mama, i closed the door!”
“mama, where’s the cat?”

all of this is awesome, as it is my child speaking in complete and coherent sentences. on the other hand, when every three seconds you are interrupted with a sentence predicated with mama, you kind of want to pull your hair out.

despite the progress, i was reminded today that there are still some things that i can’t get him to tell me, and boy howdy, are there some things i would love to know…

a) why my new shirt is “scary.

you see, i just bought a tshirt from threadless that says “rock is dead, and paper killed it.” it’s just a typographic treatment.

when i got dressed this morning i asked the kidbot “do you like mama’s new shirt?” to which he nodded and responded “ooooh! it’s scary!”

for the record, i didn’t read it to him - so the words “dead” and “killed” are irrelevant unless he has been hiding his reading talent very well (and i doubt he groks the concept of death anyway). is it that the lightning bolt is scary? that this font treatment is somehow spooky?

b) how he got that wicked scratch on his cheek.

at some point between bed time last night and first waffle this morning, the kidbot got a nasty scratch across his cheek. both cats were outside all night, and i’m pretty sure there were no middle of the night wanderings. so i would love to know where/when/how he got it. my tweeps have suggested a rowdy housefly or a toy hiding under the covers, but further investigation turned up nothing. :) when i inquired with the kidbot - he just smiled and shrugged at me.

c) why he cries whenever he hears “oxford comma” by vampire weekend.

no, i’m not kidding. he now starts crying within the first 5 seconds of the song. the funny thing is, he has always loved vampire weekend. we have listened to them on a frequent basis since he was much, much smaller than he is now. he has always danced and yelled “hey, hey, hey, hey!” during A-Punk. but now, whenever he hears oxford comma, he starts crying. i ask him why he’s sad, but he can’t tell me, and he will continue to cry until i change the song.

i’m wondering if these will forever more remain a mystery, or if someday soon, my kidbot will get to explain himself in all of his childhood-logic glory.

a plateau of sorts.

Sun, 20 Sep 2009 00:13:51 -0400

after two weeks of astonishing progress with the kidbot, this week was, well… meh.

we had tantrums. we had a whole day of a little boy with horns and a forked tail. it is undeniable that the kidbot was a handful, and both the husbot and i were tired. it was also the first week that he was back in ESD after a summer break. i’m sure that the introduction of new kids, a new routine, and a new teacher all played into what was an exhausting week for all of us.

this is not to say that he fully regressed or anything. all in all, he was still more communicative than he was just a few short weeks ago. but it seemed we had to work harder to get him to focus.

one the upside, the teacher at the ESD said that she wanted to get the kidbot reassessed. she thinks that he still qualifies for services, but that he is far more advanced then the plan he is currently on.

like mama, like son

Fri, 18 Sep 2009 23:21:00 -0400

‘

this is how the kidbot watches tv.

ok, so not always - but at least a couple of times a week and has for quite some time. now, i’ve had other people comment that it’s odd, quirky behaviour, and i always chuckled. you see, i watched tv this way when i was little too. now, i recognize that this is one of his coping mechanisms for getting vestibular stimulation.

sometimes you can hear your heartbeat pulsing in your ears.

open mouth. insert foot.

Fri, 18 Sep 2009 22:47:06 -0400

so today i was at a client meeting. this is what i do. i meet with clients. i am usually pretty okay at it.

today was sucktastically different.

you see, in a completely and utterly benign matter, my client asked “so what school does the kidbot go to?” to which i responded…

“well, he’s not in a formal preschool, he’s in a daycare… except for classes twice weekly through the school district, and therapy appointments… you see he has this thing called SPD? … do you know what that is? it’s sort of like… and vestibular…reading… delay… but you know, he’ll be fine… we were looking at montessori but… isn’t parenting AWESOME?!”

note that each of those ellipses represents at least 2 minutes of mental drool. i was totally mortified. if i didn’t have SUCH COMPLETELY AWESOME CLIENTS i would totally fire me.

i can see that while i am doing an okay job at coming to emotional terms with the kidbot’s SPD, that i desperately need to work on the elevator pitch.

the new schedule

Sun, 13 Sep 2009 23:55:45 -0400

while i am not one of the millions who sent a kindergartner off to school for the first time last week, i am the mama of a boy who will have a new, very rigorous schedule.

we just found out when the kidbot’s ESD classes through the school district will be, and they start tomorrow. additionally, we have just sorted out our therapy schedule.

the kidbot’s weeks, from here on out:

monday -
morning OT session (1 hour)
afternoon ESD class (1.5 hours)

tuesday -
daycare (full day)

wednesday -
morning “dad school”
afternoon ESD class (1.5 hours)

alternating thursdays -
morning Speech Therapy (1 hour) / afternoon “dad school”
or, daycare (full day)

friday -
daycare

as you can see - this is a lot of bouncing around. i don’t envy my husband who is the dedicated chauffeur. also note that when home he will also be continuing the brushing every couple of hours - no rest for the weary.

i’m also a bit wary as the ESD classes interfere with the time of day previously known as “NAP TIME.” i think we are going to try to phase back bed time instead… but the kidbot was on a 2-3 hour nap schedule at least 80% of the time. we have considered asking the school district for an alternate time, but there are currently only 2 other little ones in this class and i can’t really argue with a (free) class that has a 3 kid/ 2 adult ratio for 3 hours a week.

we are also at least considering the possibility of getting him into a more structured preschool rather than his daycare, but i’ve been hesitant until we’ve gotten the rest of this madness settled and in a routine. also, he adores his “school” and i don’t want to change everything all at once.

lastly, i’m trying to figure out how much i can be involved with all of the above. i learn so much by watching our therapists, and believe firmly that we have to mimic their lessons at home to give the kidbot all the support he needs. but it’s tough be a working mom… the above doesn’t mesh so well with things like daily standups and client calls.

i know i’m lucky that my husband and i have opposite schedules too… i can’t imagine what two 9-5 parents would do in our situation. but as much as i trust my husband to get the kidbot to all of his activities, convey the critical information back to me, and whatnot - i still feel like i need to be present on a regular basis, know the people who are making a difference in my kid’s life, and be an active participant.

and you know what? i’m tired and the week hasn’t started yet.

weekend routine

Sat, 12 Sep 2009 14:14:00 -0400

my husband works both friday and saturday nights - oftentimes not getting home till 3 or 4. thus, since the kidbot was born, my primary weekend morning activity has been trying to distract the kidbot and avoid meltdown so that the husbot can get just a little bit of sleep.

at the beginning of the summer, i realized that getting out of the house was the only fail-safe way to do this, so we started a routine that has now grown into a 3-hour-mom-and-kidbot-weekend adventure.

we begin at the local starbucks drive through. now, if you were to draw concentric circles around my house, there are exactly 5 starbucks that are much closer, not to mention, many other coffee establishments (some that have stumptown). but… i will happily drive 6 miles to avoid chasing my son through a parking lot while carrying hot coffee.

this starbucks happens to be across the street from clackamette park - where the willamette and clackamas rives meet. we take our coffee (the kidbot gets a vanilla steamer - and if you order a “kid’s” they make it an agreeable temperature) and split a breakfast sammie while watching the ducks, the bridge, the fishing boats, and other assorted stuff. once a month there are also occasionally old men playing horseshoes or a couple of kids at the tiny bike/skate park.

;

after we have had enough of discussing the ducks, we drive through oregon city, over the bridge, through west linn, and all the way through lake oswego. it sounds like a lot, but there is one windy country road that i love - and it’s the greatest for smelling blackberries, seeing horses, and for going a little too fast around the curves. all the while, we listen to music too loud, and the kidbot wiggles his fingers out the window in the breeze.

we finally end up either at marshall park or oaks bottom for a hike. both offer near solitude, clear trails, peace and quiet, and a good amount of nature right in the city. marshall park also has a playground with swings, which is a super extra bonus.

i cannot tell you how relaxing it is for me as a parent to let my kid run and not worry about him crashing into other kids, running in front of cars, or whatnot. i can also tell that he will grow up as an oregon boy - loving the outdoors, come rain or shine.

i realized that this routine made for really nice weekends, and now that we know about the SPD, i realize what a sensory delight these mornings are, and how we had a bit of a therapeutic routine long before we knew what was going on.

since the diagnosis we also fill his backpack with cans for a little bit of “heavy work” which seems to be a bonus. he will run (is there track and field for four year olds?), with an extra 3-4 lbs on his back for the entire perimeter of oaks bottom. someday i will figure out how far it is. but as i jog at a steady clip to keep pace, i’m surprised at his endurance.

but… now i’m worried about the rainy season. i’m expecting it to be a rough transition.

two steps forward... one step back.

Sat, 12 Sep 2009 13:30:08 -0400

as much as i would love to do nothing but celebrate the kidbot’s progress here, i think it’s important to track a little bit of everything.

today we had a bona fide, not at home, potty accident.

now, the kidbot’s been potty trained for as long as i can remember. certainly more than a year, if not much, much longer… today’s potty accident happened in the car, at the end of our usual weekend routine. we do the same activities, at the same time, with the same liquid intake and have now for the vast majority of the summer. the potty mishap came without so much as a warning from the kidbot. i’m thankful that it least it happened in the car and not in a store or at the playground. it was obvious that he felt bad, if not a little bit confused.

i’ve mentioned before that the therapist warned that sometimes there are a few “regressions” that come with the improvements, and we’ve had a few of those at naptime. but this one, this worries me. *sigh*

a follow up post...

Sat, 12 Sep 2009 09:39:00 -0400

i awoke to find a “stickies” note on my laptop from my husband. i suppose this happens when you use tumblr and are too lazy to hook up discus comments. here’s what he shared:

btw, when i picked bobo up from school yesterday (thursday), he was sitting in a room full of madness and mayhem with his backpack on, amidst the other kids, reading a book. when i came in and said, “bobo, it’s time to go,” he looked up and said “hallo, dadda!” calmly put his book away, gave me a hug and led me out of the room by the hand.

friday, he was outside with the other kids and they were getting into line to come inside, he was standing in line (with backpack) and saw me…immediately ran to the front of the line to see me…i told him he had to get back in line… which he did…then went with the other kids for potty time. one of the teachers intercepted him at the gate and said, “travis, please go potty…” and then saw me and retracted it, even though he was on his way to fulfill the potty command, i stopped him, asked him, “travis, do you need to go potty or do you want to go home?” to which he responded, “no, let’s go home, dadda.” no shit…just like i wrote it.

more about the backpack later.

"no mama, not right now."

Sat, 12 Sep 2009 00:27:00 -0400

my kid said this to me today.

parents of most four year olds don’t really get excited when their kids say things like “no mama, not right now.” in fact, i’d imagine that most parents dislike it. they just see similar statements as their kid being difficult.

but not me. i’m proud of him.

you see, up until his fourth birthday my kid had two full (more than 3 word) sentences that he would say on a regular basis:

1) can i have some {insert food name here} please?

and

2) can i watch some {insert tv program name here} please?

notice the similarity between the two - both are similar in structure (which we hammered into him, although he some how learned to swap the verbs out on his own), but both are also inquiries that got him his favorite things.

he also almost never called me mama until recently.

up until today, a similar reaction to the “no mama, not right now” situation would have involved him either running away, yelling loudly with a furled brow, or perhaps a straight out tantrum.

instead of fighting, yelling or running… today, he simply said “no mama, not right now.”

this feels like a major milestone.

the importance of naming things.

Fri, 11 Sep 2009 23:24:00 -0400

for many, many years now, i’ve been obsessed with naming.

for instance - i am a girl named james married to a man named jaimie. i wrote my english thesis on william blake and how in the book of urizen he argued that naming, classification and the fundamental structure of human language would forever keep us from the knowing the divine. also, my obsession with naming and classification is perhaps the most reasonable explanation for how a liberal arts jill-of-all-trades ended up as an information architect.

so - it struck me recently, as i was chatting with some fellow mamas on twitter, that it was having a name for the kidbot’s disorder that has unlocked so many doors for my kid, myself, and our family.

without a name, you can not get any reasonable treatment.

when the kidbot was first defined by the medical community as different - he got a diagnoses of “PDD-NOS.” That stands for Pervasive Developmental Delays - Not Otherwise Specified; which essentially means that “your kid is slower than his peer group in more than one area and we don’t know why.”

that title was enough to get him into a program in the school district - which is great. but if you don’t know why there are PDD, essentially, the program is only treating a symptom - and not very effectively. It’s like taking a tylenol to get rid of the fever associated with an infection, but not addressing the infection itself.

without a name, you don’t know what to ask for

when we ascertained that the help through the school district was not kick-starting the kidbot, we decided to be more aggressive in pursuing other means of treatment. we bullied our pediatrician into giving us a referral to the Child Developmental Rehabilitation Center (CDRC) up at OHSU, and because the kidbot’s most obvious delay was that of speech, she referred us to a speech therapist.

the therapist did an evaluation (not unlike the one done at the local school). she admitted that by the end of the evaluation she had “run out of her usual bag of tricks” that she uses to get kids to focus. then essentially she said “yes, he has a delay, so are you looking for a referral for one-on-one speech therapy? i believe he would benefit from that.”

it was odd that she questioned if that’s what we wanted, as if we may ask for something else. but, truthfully, i didn’t know what else to ask for. and she seemed otherwise unconcerned with the fact that in one session, our child had run her through her entire “here, pay attention to me” repertoire.

to this day, i am thankful that we chose our one-on-one speech therapist by the fact that the treatment center focuses on more than just speech - in hopes that the therapist may recognize something else going on. our therapist did. and the results have been coming ever sense.

without a name, it’s not covered by health insurance

i won’t open up the pandora’s box of my feelings about health insurance (especially with the news-filled week we’ve had) - except to say, that the kidbot is now in occupational therapy, and those visits are covered by our plan. (up to a moderately reasonable point, anyway)

without a name, it’s REALLY hard to talk to people

there is a huge difference between saying -

a) we can’t go the the playground with you because when i try to get my son to get off the swings when it is no longer his turn he will scream, and kick and cry so hard that he might throw up. (yes, my 4-year-old, yours doesn’t do that?)

b) the kidbot has something called sensory processing disorder which makes it hard for both of us to have fun on the playground during a busy time. maybe we could go first thing in the morning when it’s ok that he hogs the swingset?

i’ve struggled for several years with not quite being able to explain to folks why playground meetups may not be a great idea, or why the thought of bringing the kidbot to a coffee shop or to a restaurant filled me with dread. the possibility of an epic tantrum, the kidbot being inadvertently rough with another kid, his obvious speech issue, and his inability to sit still have all added up to a rather lonely few years for us.

suddenly, we have words to explain these behaviours. suddenly we have tools to handle these situations.

suddenly i can have a sane and honest conversation with my best friends, co-workers, extended family, and others about why my kid is who he is, and how the whole family is working together to make things better.

suddenly i can WRITE and process what we’ve been through. (before, when i’ve tried to explain our kid’s behaviour, it just sounded like my own personal perennially bad parenting.)

and now - now that i have a name for this crazy thing we’re going through - i’ve had an outcry of support and have now even connected with parents going through similar things.

so… thank you.

seeking the elusive sensory limit

Wed, 09 Sep 2009 00:58:00 -0400

today we had our first “real” appointment with the OT. last week (when we learned the brushing protocol) was merely an evaluation visit. the appointment confirmed the fact that i very much like our therapist, and the hour was good for more than a few belly laughs. this is not the type of therapy we pay her for, but is side benefit and is much cheaper than seeing a therapist to work through our family-of-an-SPD-child stress issues.

the OT began the appointment by making a plan (simple drawings in a series of squares that lay out the activities ahead) and we discussed our thoughts and observations from the last week since we began the brushing protocol. she also observed the husbot giving the protocol to the kidbot, to confirm that we were doing things correctly. (we were; husbot passed the test; phew!)

then we began the “rainbow swing” activity. this is really where the fun began.

so for those of you who have never been in an OT room - it’s a bit like an indoor, awesome, jungle gym, romper room type place. there are more toys, foam structures, and detachable swinging apparatus than one can imagine. but today was about the rainbow swing… and wow…

after a bit of research i discovered that THIS is the swing in question. it’s essentially 4 pieces of super heavy duty lycra that were suspended from the ceiling in 4 points. first, the kidbot was to climb from the bottom-most layer through each layer to the top. (hard, wriggly, work, combined with massive input from being enveloped by lycra). next he was rolled, swung, tickled, bounced… you name it… all the while screaming and laughing “more! more!” it was quite a sight to behold and we were all laughing right along with him.

it was hilarious, and the kidbot was so obviously ecstatic that it was contagious. the really funny thing is that in between major bouts of activity the OT was (breathlessly) trying to explain what was going on. (“he is enveloped in the swing, so can’t see here, so he can’t use the horizon to orient his vestibular system…”)

soon the husbot and i both jumped in to help the OT with a few vestibular stimulation “rainbow swing” techniques to a) give the poor therapist a break and b) achieve a point at which the kidbot would feel he had “too much”… to reach a breaking point.

and let’s just say that the OT was um… impressed?! … with the amount of crazy vestibular jostling that the kidbot could take. my sensory seeking child proved a challenge for even a seasoned OT. awesome.

eventually he asked to “slow down” and that was close enough to hitting a limit.

i’ve been trying to understand a way to articulate how this is all helpful, and i’ve come to the following (perhaps misguided) explanation… if you offer a child cake, he will likely eat and eat and eat until he’s sick. the next time he eats cake, he’ll have a better sense of what is excessive cake eating, and may do a better job regulating his desire for cake input. (so yeah, it needs work, but you get the idea).

i should also note that by the end of the session, the kidbot was focusing nicely on some fine motor activity while sitting very quiet and still. we achieved focus yet again. it was a rare sight to behold. the therapist was wonderfully explicit in how to approach play at home - structuring activities very explicitly to be for sensory stimulation, social interaction, or focused/learning time.

we’ve talked a little bit about how to bring the extreme sensory input activities into our house, especially with the rainy season looming on the horizon. it gave me a renewed interest in a purchase we made at the local IKEA about a year ago - the EKORRE Hanging Swing. it was $40, and had gone largely unused until today. (i had imagined a pod-like book nook, and y’all know how that reading thing was going… so…)

as it turns out, this swing is awesome for a little bit of home-vestibular-activity and as a bonus - it was manageable in terms of ratio between parental effort and kidbot satisfaction…

this is a video of the kidbot once he had asked to transition to “slow” after about 10 minutes of more extreme spinning and swinging:

traumatic birth coming back around for more trauma

Mon, 07 Sep 2009 11:11:35 -0400

so part of the parenting experience, whether you’ve got a healthy child or not, is a healthy dose of parental guilt. you spend an awful lot of time wondering if you are doing the right thing. whether you should have done this, or whether that was the wrong choice. you are wondering if your parents, your peers, your siblings and those other people on the playground or in the supermarket are judging you for your child’s unusual behavior.

having been raised catholic, i’m a pro at that whole guilt thing - and it prepared me to be an overly neurotic parent. mix that with an SPD kid who is prone to the occasional EPIC tantrum and with a desire to crash unknowingly and unrelentingly into other kids, and you create a mom that quite literally fears taking her child in public. (did i say that out loud? yes, i admit it. more on that another time)

over the last few years, i’ve gotten much better at dealing with my guilt issues, and trusting myself as a parent… but there is one moment recently that hit me where it hurts. when we first went to see the speech therapist, we had to fill out the usual litany of medical forms - which were normal enough - except for the “birth story” question. i actually asked the receptionist if it really meant i was to recount my birth story.

you see, i have tried hard to forget the whole thing. i went into childbirth armed with a ton of knowledge, a heap of i-am-woman-hear-me-roar, and a deep conviction to have my kid naturally, pain and all. to make an exceedingly long story short - after induction and more than 24 hours of labor - the whole thing ended up in me having a fever, the kidbot with a dropping heart rate, having a needle injected into my spine mid-contraction, an emergency c-section, and then being the absolute last person to hold my kid because my arms were so numb i couldn’t feel them, much less snuggle my newborn.

as you might imagine, this wasn’t quite the outcome i had hoped for… but i kind of expected that the crazy birth story would end there. as it turns out, a traumatic birth can oftentimes lead to all sorts of problems, including having one very unhappy and confused nervous system.

now, i fully realize that any guilt over this is completely irrational, and quite frankly, a waste of energy that is needed elsewhere… but… at the same time, i wonder - what if i had not been so stubborn about natural childbirth? what if we had not induced? what if? what if? what if?

and the truth of the matter is no one knows, and likely no one will ever be able to tell me if things could have been different. no one really knows why certain kids have SPD. and well, at some point i guess i’ll learn to accept that. ;-)

brown bear, brown bear

Sun, 06 Sep 2009 22:22:09 -0400

my husband and i were both english majors.

we have so many books in our house that we have vowed never to move again simply so that we don’t have to move them or the numerous, heavy book shelves we own to house them.

i have tried for nearly three years to get my son to sit still for an entire book. (even a very small board book).

above all of our other various parenting challenges, this is perhaps one that has been the hardest for us to deal with over the last few years. it’s hard not to take it personally when your child won’t sit still for goodnight moon or green eggs and ham.

up until very recently, book reading would involve me sitting the kidbot down (him opposite me, rather than snuggled next to me or on my lap, at his adamant insistence), and getting through about 3 pages. at that point he would stand up and his attention redirected to something (ANYTHING!) else in the room.

at first i figured that he was just a high-spirited toddler, and as he got older, he’d be able to focus better. but month after month, his ability or desire to sit still for more than a couple pages never got better. neither bribery or reprimands seemed to work. every book reading session (once or twice a day for nearly three years) was pulling teeth, for both of us.

after awhile i began to have fears of a child who did not like to read. (imagine, the horror!) these gave way to fears about an illiterate child, who would always struggle in school and fall behind his classmates. finally i became overwhelmed and wondered if he was truly ADD or ADHD, and that i would have to medicate my dear little boy.

i will find another post to recount our efforts to get him referrals to see specialists for these behaviours - but needless to say, we finally found ourselves with a referral for one-on-one speech therapy. (again, he was seeing a speech therapist in a group setting through the local school district, but had seen very little progress).

on our first visit to the speech therapist, she commented on his distractibility, and asked a few prodding questions about his need for sensory stimulation. on the second visit (a week later) she read him a book, which resulted in his usual mixture of apparent boredom and irritation. not 10 minutes later, she asked that i hold him on my lap and rock with her as she read a book that had a sing-song rhythm to it.

we read the entirety of “Brown Bear, Brown Bear” in one sitting. cover to cover. rocking together.

i almost cried.

she left us with the assignment to get our hands on one (or three) of the bear books from the local library - or focus on any other book that could be read while rocking. she also handed us a sensory questionnaire to be filled out for the next session. it seems that with some vestibular stimulation, for the first time the kidbot could actually focus on and enjoy a book.

this thursday (just 3 weeks later, and 2 days after we started the brushing protocol) my husbot IM’d me and let me know that the kidbot was sitting and “reading” brown bear to himself.

again, i almost cried.