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?
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?
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.
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?
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.
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.
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.
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” …
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.
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.
‘
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.