The Next, and Last, IFSP

So, the next and last IFSP for Kittyboy is going to be two weeks from today. I don't know why therapists don't get more than two weeks notice, considering the paperwork involved in evals and reports, but there you have it.
As I've mentioned, we anticipate Kittyboy TOTALLY clearing OT. There's nothing going on sensory-wise that we can't handle. And I would have expected him to leave Speech behind as well, except... the older he gets, the higher they raise the bar. He MAY still qualify, because although he's attained two-year-old level verbal language (a stranger could understand probably 50% of what he says), a three-year-old is expected to be understood 75% of the time (again, by a stranger who is unfamiliar with his particular "dialect"). The equation is 25% per year of age. Yes, that does mean that you should be able to understand one hundred percent of what your four-year-old tells you. When Bree told me that this morning, I STARED at her, and then I said I'd known many kindergartners in SCOPE who REALLY, REALLY, REALLY qualified for speech therapy.
I once had a conversation with an absolutely precious five-year-old girl, who was getting anxious because her mommy was running later than normal. I asked her what her mommy's car looked like, and she said it was a "gavudabu". A what? "It's a gavudabu!" And that was the only description I could get. Clearly, that was supposed to tell me something very significant about her mother's vehicle. After some time, the light came on - CONVERTIBLE. "Is her car a convertible?" "Thas wha I said, a gavudabu!" Yup. (Should I ever have a convertible, my license plate will be GAVDBU).
We've got Kittyboy saying "potty" when he needs to go, because "toilet" (though he does say it) sounds like a fourth of his vocabulary. It has to be something we can understand. I guess a lot of his speech we do translate from context - tractor and chocolate, for example, are not much distinguished from each other.
And he'll be three on Christmas, so that's the standard they'll be using. Since what he will say far outranks what even WE actually understand, he may well still need Speech, I don't know. It's not vocab, his vocabulary is GREAT - it's enunciation. (Man, they're picky!) But yeah, I can see where enunciation would be almost as important as vocabulary - can't communicate if you're not understood.
Dilemma - if he still qualifies, it will be the school district which picks up his therapy. Good news, they do have to provide services whether or not he goes, and what they provide will be free - bad news, they do not provide as MUCH to children who aren't attending. A kid in Early Start or Headstart or whatever they call it might get half an hour twice a week - one who's not attending might get half an hour every other week, or even just once a month, in which case, what's the point. We can go to Childrite where he's been going, privately, though insurance would NOT pay for it (we already know this).
Off the top of my head, if he does still qualify, my ideas are as follows -
Discuss by what percentage he still qualifies, and find out how important they think it is that he does continue to receive services. If it's the same small percentage by which he qualified six months ago, then he's just continuing to progress at the same delayed rate, no big deal. If, on the other hand, he qualified by 4% six months ago, and now qualifies by much more because of the higher expectations of being 3 (i.e., he's not maintaining the same learning curve, but instead falling further behind others in his age group), eeehhh, we'll see how much the district WILL do if he doesn't attend preschool, and whether Bree thinks it's enough to be worth it.
IF the delay, relatively speaking, is something that warrants continued therapy, and IF Bree thinks the "out-patient" district services aren't going to be enough, we would have things to think about. One thought being, eeehhh, find out how many hours a day Headstart, Early Start, whatever it is, is, and how flexible they are on attendance, and go from there.
It's all academic though, until the evals are done. I just like to keep in mind, "Okay, worst case scenario, what would we do next?" Something I learned from my dad, WHO, by the way, has a blog now, speedscreed.blogspot.com. I highly recommend it.

Back to Aqua Therapy

A year ago, Kittyboy was in aqua therapy, aka pool playtime, because he refused to be bathed. I hadn't even TRIED to bathe him for months at that point, because I just wasn't going to wrestle the slippery infant who screamed as if traumatized whenever I set him in water. Not worth it. Baby wipes kept him clean "enough" anyhow, you know? Well, one session got him taking baths with no problem, so we never did it again... but this last winter, he decided that baths were once more WWIII. He got his first haircut not because his hair was all that long, but because it was matting into dreads in the back because I couldn't wash it. Rasta boy. Husband tried one day, after I cut off the dreads, to give him a bath - saying, "If he needs this, then we're doing it one way or another" is a daddy thing. I stood at the other end of the house listening to the truly terrified screams of "MOMMY!! MOMMY!! ALL DONE!! ALL DONE!!" in tears myself. And Husband did conclude that it really wasn't that I'm such a softy after all - Kittyboy had a real problem with either water, our tub, or both. And he's so strong, it's just not a good idea to wrestle him in the tub. BUT, he is no longer of the age where baby wipes are good enough. His hair, especially, smells quite like a lockerroom. He splashes in puddles, he splashes with his hands in buckets, he plays in the hose, but he will NOT go in the bathtub.
So we restarted pool time today. It'll probably be every other week. He was excited to see the pool - not excited at the idea of getting in. I'd been dreading that he would not show any problems at all with the pool (like taking the car to the mechanic and having it run just fine then), and that he had a problem with just bathtubs, and if that were the case, what would we do? My fears on that were unfounded. Ginny and Janelle, a new OT, got in the water, and asked him if he wanted to sit on the edge and splash - "Uh uh, all done." Waving his hands, backing up, not going near that water. The more they tried to coax him in, the more anxious he got. He was willing to stand near the edge and throw a ball through a basket floating in the water, but he wouldn't go in. Twenty minutes or so of every trick in the book, and an OT's book of tricks is pretty extensive, and any time they tried to put him in, he cried and ran away. He was happy being splashed - he would lay on his stomach on the side and splash with his hand - but when Ginny set him with his feet in it, he cried and scrambled out.
It was fascinating to watch while they troubleshot and bounced ideas off each other. Idea #1 - he doesn't like the 360 degrees of pressure from the water. But, he likes tight hugs, sleeps under 8 lbs of beans, etc. Rejected - but modified into Idea #2, which is he doesn't like that the water partially supports him while being fluid, he feels insecure in it. Okaaaay, so it's like the proprioceptive dysfunction which got him sleeping under weight in the first place. He needs the weight for truly sound sleep because it keeps him feeling grounded - in the water, he feels much less grounded even than normal. So we tried one-pound ankle weights.
Ankle weights, like chocolate, make everything better! He stomped about with them quite happily. They got him to dangle his feet in the water and kick, and once he figured out that something was different now, he was okay with going in. You could see he was still a little anxious with each new activity (working towards less and less support around him) but he was willing to give it a go, and by the end, he was having such fun he didn't want to leave!
So we have a shopping list - ankle weights, a wading pool (ours from last year cracked) and a round, colorful laundry basket. Get him to sit in the pool in the laundry basket, for sort of a boundary, and then once he's happy and fine with that, move the Happy Boundary-Providing Laundry Basket into the tub. I should add a swimsuit for me to the shopping list, because somehow I suspect this will become a communal affair, at least for a while!

A Sad Goodbye (Therapy Update)

Our OT Misty was returning voice-mails late last night, and broke the very sad news that TODAY was Kittyboy's last day with Janna SL! We were quite sad, and so we made sure to get a picture of Kittyboy with The One Who Got Him Talking.

She's trying to get him to BLOW on the pinwheel - he's trying to show her, "Look, there's an easier way, you just spin it like this!"
Last August, Kittyboy was evaluated to have an 85% delay in communication - he had maybe half a dozen signs (for the basics, eat, drink, more, please, thank you, night-night) and babbled on the level of a four-month old. He was 18 months, chronological age. He rarely signed without prompting - he would bring a book and bang the corner into your leg saying, "MM! MM!" rather than hand it to you and sign please. We had eliminated basic hunger and thirst as a cause for tantrums, but he still collapsed in tears on a regular basis for no discernable reason, because he couldn't SAY, "Mommy, I can't find my teddy bear" "Mommy, I want to go outside" "Mommy, I want peas instead of corn for lunch". Boy, oh boy, did he qualify for Speech therapy.
Some time last September or October, maybe the second or third time she saw him, Janna SL said, "I think he's trying to say it with his mouth closed. Has he ever been diagnosed with oral aphasia?" And thus began a voyage of discovery - he was indeed trying to copy speech, but wasn't opening his mouth. Either didn't realize he had to, or thought it WAS open (when he was learning to drink through a straw, we had many problems with milk spilling out because he would forget to close his lips). What a difference it made, when instead of sighing, "Please, don't WHINE!" we started asking him what he was trying to SAY. The whining tone slowly disappeared as he realized he was finally being listened to - and we slowly learned to distinguish between mm, ng, gng, gm, and all the other noises he made with his mouth closed. We still had no clue what he was trying to say, but we could tell that one was different from another, and that was a start. It took off from there.
So this is the lady who got him talking. When Kittyboy runs up to me and says "Mommy, [sign for help]!" I thank God for Janna. Now that he knows how communication works (and that he is fully capable of it) he dives into it headlong - he hybridizes signs to approximate a word for which he doesn't have a sign, he makes up signs sometimes, he parrots words all day long, and he'll attempt words that are difficult by just taking the first syllable and repeating it. Je-je for Jesus. And usually (usually), he does it without us having to push him back, unwrap his fingers from our clothing, and say, "Stop whining and TELL US!" I had described it to Janna as his baby chimp act - pulling on us, trying to climb us, and whining unintelligibly. He has baby chimp moments, but it's not ALL DAY LONG.
Misty will be finding us another SLT, or possibly our EI coordinator will. I'm sure it will be someone good, either way, we've had wonderful therapists all around - but I need to print and frame that picture, of Kittyboy and The One Who Got Him Talking (and saved our sanity!).
We will miss Janna very much. May God bless her work and all the lives she touches. She touched ours in a BIG way.

Good, Grand, Glorious News in the Speech Department

Kittyboy performed so marvelously in his Speech eval this morning, I think we'll probably lose Janna the SLT next month. We may hold onto her for another half-year, but I kind of doubt it. Not only is his expressive vocabulary growing by an average of a word a day, but he said "airplane" this morning! Okay, so it was more like "ay-pay" but it was a two syllable word, the two syllables of which are totally different from each other. It was obvious what he meant, we called the winged vehicle in his hand an airplane and he instantly responded with the word. THAT was amazing.
Janna said he obviously comprehends far, far more than he can express. We already knew this, but she was quite impressed at the extent to which that's true. And having gotten a taste of what communication - gestured or spoken - will get him, he's constantly looking to use it whenever possible. So he's sort of to the point of teaching himself! He's pushing his own boundaries now, of his own accord - eagerly and with gusto!
Ginny the OT, we will most likely have for another six months to practice sitting, completing tasks, and following instructions. Then we'll say goodbye to her too. Unless the school district has a concern they think warrants following, we will be completely sans therapists by November. How weird would THAT be? No one taking notes, evaluating, re-evaluating, checking things, asking questions, saying, "Here's what we're working on next..." Just us and a healthy, normal, scarily bright toddler.
Let's just hope God knows what He's doing, shall we? He's not SUPPOSED to give us more than we can handle. Would it be irreverent to say, I hope He remembers that?

The Thursday Habit

I didn't realized I'd posted all THAT much on Thursdays about Kittyboy's therapy, but what do you know - I didn't post yesterday, and this morning I had a call from my grandmother pointing out that she didn't yet have stories about her great-grandson from yesterday! (I e-mail her my blog entries)
So, amusing stories of therapy!
Every week, he dives into Janna and Ginny's bags to ransack them for his favorite toys. They have big tote bags full to the brim of lovely things for Kittyboys and girls to play with, rather like Santa - puzzles, books, puppets, dolls, trains, ring-stackers, shape-sorters, all sorts of things. I do believe he even knows by now which bags hold which toys, the better to find his favorites in a timely manner. Until yesterday, his all-time favorite of Janna's was a Fisher Price farm. This last week, however, we had a lovely surprise in the mail. My aunt in California sent us a package! A LARGE package, just out of the blue, with a Christmas gift inside, and a note saying she "hoped it wasn't too young for him". He tore the paper off the front and went hog-wild, pardon the pun, bouncing up and down saying, "Moo moo! Moo moo! Moo moo! Moo moo! Moo moo!" pounding on the box. It was his very own Fisher Price farm!! I could NOT get it out of the box fast enough for him, especially since I was undoing twist-ties with one hand while fending him off with the other as he jumped on ME, still frantically mooing. (He knows what cows say! BOY, does he know what cows say!) I had to just rip the animals out with the cardboard still attached, to distract him while I pulled on the barn itself. Somehow, I got everything out without anything being broken OR the Kittyboy's little brain going POP from over-excitement.
So, since he had been playing with his very own farm all week, Janna's farm wasn't the first thing he went for. The thing that amused him most turned out to be her boxes of flash-cards. The big box of cards has different sections in it, depending on the relative difficulty of the words. The first section is the two-syllable repetitive ones - ma-ma, da-da, moo-moo, nay-nay, baa-baa, and so forth. Next are two syllable words with different vowels, like mommy, daddy, baby, etc. It's like "Talking for Dummies", not to imply that children who need extensive help and practice to speak are unintelligent, but it's that sort of VERY basic, broken-down, step-by-step instruction. Well, for some reason he wanted those cards more than anything else. We went through cards again and again - then we would try to do a puzzle. He got maybe five pieces out of the eight piece puzzle, then he was DONE and wanted the cards again. Then we tried a stacking toy, which was going to become a tantrum when he decided again he was all done. Boy, those cards were just the coolest thing. He wanted the Mama and Dada cards in particular. At one point, when he was DONE with a book, he picked up the box saying "Mama! Mama!" Janna played dumb and pulled out ALL the cards and went through them one by one, pretending to not understand which one he wanted. "Woof woof?" "Mama!" "Peep peep?" "Mama!" "Nay nay?" "Mama!" After a few cards, he started walking in circles in front of her saying, "Mama Mama Mama Mama Mama Mama Mama Mama..." until she pulled out the right card.
Pretty much the only NEW thing yesterday is that he is more and more imitating what we say right when we say it, so he is imitating more consistently. He did say Bye-bye when we left! And he is beginning to make two-syllable noises for two-syllable words, even if it's just "nn-nn" or "mm-mm". It's just when he hears the words, he's not initiating conversation, but just seeing imitation of ANY sort regularly is terrific! It makes it easier to put up with the screams, squeals, grunts and growls he uses on a daily basis. We're getting there!

Speech/OT rejoicing!! - mostly

My, what a complicated day at therapy this morning. I have people to call, stuff to fill out, and a book to read. All for Kittyboy!
First, we have cause for rejoicing - during therapy, we heard for the first time ever, Neigh-neigh, Baa-baa, Woof-woof, Moo-moo, and Boo (blue). All in an hour's time, just out of the clear blue sky. Opening mouth and everything. Janna, Ginny and I were just flabbergasted, and of course applauded and cheered like mad!!! Janna says to keep hitting two-syllable repetitive words really hard, because he's definitely open to that now. Woohoo!
Second, Misty (who oversees all) came in to talk about his next IFSP. She says she can already tell us "Don't be alarmed, but he is SO going to flunk this thing" (my wording, not hers) because with a standardized test, if he does not do exactly as asked the FIRST time he's asked, he gets no points on that task. And we all know Kittyboy CAN stack four blocks on top of each other, but the first time he's asked to, will he? No, he will probably stack two, pound the others on the table, and throw them. So he's going to score very low, not because he lacks the actual abilities, but because he lacks the focus required to demonstrate them on cue. And she's going to put in her report that we have all seen him do this stuff, but it's a matter of sensory processing and integration taking up soooo much brain power that it doesn't leave much to focus on other tasks. He qualifies for OT based not on his fine-motor skills, but sensory integration. Your brain can only do so much at once, and his has more to deal with than the average two-year-old's. It's the difference between surfing the internet while listening to music on the computer, and surfing the internet while two or three things are downloading AND listening to music. That's basically what he's dealing with - sensory integration is taking processing power and bandwidth, slowing things down, instead of running quietly in the background like it's supposed to. As a result, some pages open slowly, some won't load correctly, some can't be running at the same time as others.
Actually, come to think of it, that's a VERY good analogy for sensory processing dysfunction.
Thirdly, oh happy day, because he is two years old, not potty-trained, and has issues that may make that take a long time, she says we qualify for free diapers through her clinic's diaper program. From ages 2-18! He'll be trained before then. :) So I have a number to call to set that up. Another expense to cross off the list, which is MARVELOUS because I had just been thinking about how diapers get more and more expensive the larger the size. He wears on average maybe four cloth diapers a day, because he goes in disposables overnight, any time we go out, or if I try to put him down for a nap, if we're visiting or traveling, you get the idea.
Fourthly, I have two copies of the "Sensory Processing Disorder Symptom Checklist" to fill out. One I'm filling out according to what issues we saw a year ago, one is for him as he is now, so we can track his progress. I haven't actually perused the checklist in months, so it should be really interesting.
And finally, I have a booklet to study entitled, "When I'm 3, Where Will I Be?" It goes over the transition process from Early Intervention, which goes up to age 3, to school district services (should we require them). I thought it was almost a year off, but the process begins at 2 years and 6 months! So in JUNE, we'll be sitting down with our coordinator to put together a referral packet and get things started! How exciting!

Evals for the IFSP

IFSP is coming up next month. I think that stands for Individual Family Service Plan, it's the meeting where we discuss what therapies Kittyboy requires from Early Intervention. We have these every six months. At the last one, we gained OT. And wheeew, I think this time we'll be LOSING therapists. PT and DT did their evaluations today, and when I asked Janna the PT if we'd be seeing her two weeks from today, she said only if he still qualified for PT after she scores his test. I kind of doubt it, honestly, because he may be a touch "behind" still, but no longer anywhere near the 30% delay required to qualify. No where near. We've had Janna since Kittyboy came home, and it would be so weird to lose her. But so cool to no longer qualify for every therapy on the face of the planet. We might lose Rhonda DT too, but of that I'm not so sure, because a lot of things she asked Kittyboy to do, he didn't do. That's not necessarily because he CAN'T, it's because of what she called his 45-second attention span. I don't know how that plays out when it comes to calculating a percentage of delay.

When he came home from the hospital, we had PT, DT, and feeding therapists just about immediately. Feeding, there was no question, because Kittyboy couldn't swallow thin liquids without choking. PT and DT he qualified for based first on prematurity, then because of a head tilt, a general weakness on the left side of his body, and an all-over delay in things like rolling, shaking rattles and whatnot. They're the ones who first thought there was a hearing problem, which lead to proof that he had auditory processing issues (because there was an undeniable "hearing problem" but his ears "heard" perfectly), which lead to Misty the OT, who diagnosed sensory processing problems overall. Once we got OT, everything started falling into place! And now he doesn't NEED Janna PT or Rhonda DT and may no longer even qualify for either. :)

Doesn't mean we won't miss them, very very much. :(

First appointment with SL

Guess what - there's basically not a thing Speech can do that we're not trying to do already.

AAARRRGGGHH!

He's just going to talk really late, that's all there is to it. You can lead a horse to water, but not make him drink - you can put a toddler in his bed, but not make him sleep - and you can say "ball! ball! buh-buh ball!" 'til the cows come home, and if he's not in a "b" mood, buh-buh-buh will never happen. He knows what a ball is, he likes them very much, throwing and fetching, but he absolutely will not say buh on command. I'm beginning to think he doesn't see the point. He KNOWS the colorful sphere is a ball - why bother to SAY it? The same for kitty, doggie, all that. What silly grownups we are, that we want HIM to tell us what a ball is and what a kitty is.

Our "home assignment" - business as usual!

Therapies.....

So, the round-up - we're gaining Speech/Language (woohoo!), but I predict losing possibly everyone else except Feeding come November.
We had OT Thursday and the therapist we saw hadn't seen him for about a month (it's a clinic, we're ostensibly under Misty, but actually see Ginny now on a weekly basis and Misty follows up now and then), and this week we saw both, and Misty was amazed at how well he is doing. She asked what our concerns were - and I honestly couldn't think of anything. I guess I hadn't noticed so much because we see him on a daily basis, but gee, he looks exactly like a normal 1 1/2 year old! His body awareness, sensory integration, all that, are vastly improved, and really, it appears that the activities he's been getting at home are sufficient. He bounces on the trampoline, proprioceptive input - he runs around outside barefoot, so he gets input from different textures and surfaces - he climbs on things, pulls and pushes full laundry baskets and recycling bins, carries and throws his weighted stuff, more proprioception - his home "OT" is probably sufficient for his needs. So there goes one therapy we probably won't need anymore. PT, DT, he's walking so well and catching onto things so much more quickly now that we know what he needs as far as activity, I don't even know that we'll be keeping them after the next IFSP. We may be down to Feeding and Language.
How weird would that be! :) I would miss people!

The Making of a Weighted Critter

Kittyboy now has a "therapeutic" weighted animal! He was having such fun this afternoon throwing his 4.5 pound pillow and carrying it around, I figured now would be a good time to get him a weighted animal for "heavy work". Didn't bother checking prices on those - weighted blankets start at about $50, the cheapest I've found, so I'm assuming anything else weighted would be similarly expensive. May I recommend, Build-A-Bear (or Fluff N Stuff, or other similar stores) and aquarium gravel?
"Rocky" is a 10" tall brown puppy who weighs two ounces shy of five pounds. I wouldn't put him in a washer or dryer, but he's certainly washable in the bucket-and-soap sense. You can buy a critter without stuffing it there, you get an odd look, but they let you.
As of yet, Kittyboy is oddly disinterested. I'm going to make Rocky a colorful collar or something, and in the meantime, he's holding Kittyboy's bottle as he goes to sleep. Maybe they'll bond over naptime.

Speech and Language Therapy is COMING!!!!!!

I just have to celebrate, Kittyboy was evaluated this morning for S/L, which is speech/language. His speech/feeding therapist did the eval, and finished it with "Now, I don't want to upset you, but even at his adjusted age [about three months less than actual age], he REALLY qualifies for therapy. I'm going to recommend weekly, because he really needs it!"
What's to get upset about? Hey, when the 19-month-old's biggest VOCAL achievement to date was Mama and Dada a couple weeks ago (he did babble before, it just wasn't specific yet), it's pretty obvious there's a need here! I'm just as excited as all get-out that the need definitely showed up in the testing, so he'll be definitely getting therapy, instead of him magically doing things he never does for us, for the therapist, and then it being only our word that "No, seriously, he DOESN'T TALK."
At least, since he started walking in late April, no one's guessing him to be half his age anymore. People used to, when at 16 months he was babbling as if he were 4-6 months and crawling all over but not taking a step. "Oh, what a precious baby! How old, 8, 9 months old?"
My toddler babbles, for the most part, on only a 4-6 month level! I'm ecstatic! (What a bizarre reason to rejoice!)