Overwhelmingly good news

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I am shaking and teary, but it’s because I’m so HAPPY. Since the last post, we did have another ABA implementer.. but only for about a month before she too had to move on. Also, our insurance provider changed at the beginning of the year. This meant that I had no clue to what extent any of his services would be covered, if at all. I did know that the company we were going through for his ABA was not in-network for the new insurance, and the same with his OT.

I have since found that there are in-network OTs and also Speech Pathologists in the area. (The old insurance would cover just one – the clinic at the hospital.) We do like his current OT, and they’re willing to work with us on payment, but in-network would have no deductible. That might be too good to resist switching, even if it means a period of the new OT getting used to him (and the uncertainty of whether they’d be a good mesh.) I’m weighing the options there. Speech, since he doesn’t currently have one, obviously we’ll just pick one of the in-network folks and hope for the best fit. He’s a lot more sociable/open to any people than he used to be a couple years ago, so I’m not as worried about that as I would have been. Having secondary speech beyond just what he gets at school will be wonderful for him.

That’s not the good bit though. I mean, the fact that there’s in network options now is good, but it’s still the fairly standard $30 copay/max 20 sessions covered per year. (And speech he would be best served going weekly, but we’ll take what we can get.. better than the none he’s getting right now.)

The fantastic bit is this – I had sent an e-mail to one of the newer ABA companies in town. Their website listed our new insurance as one of the plans they were contracted with, so I e-mailed with our specific info just to be certain that our plan was one that would cover it. I just got a call back from the gal in the KC office… not only is it a covered service, but it’s covered at 100%, no deductible. I made her repeat it… 100%. No copays? No copays. No co-insurance? No. It sounds like it’s free for him, up to age 19, as long as he’s got the diagnosis/prescription for ABA. Well I’ll be. We’ve got the diagnosis, and an evaluation form stating that they “recommend” ABA/EIBI for him. If they want it written on a prescription pad paper, I’ll get right on calling his doctors about that. *hehe* I’m so giddy.. not worrying about where the money for so many hours of therapy will come from? This totally makes the increased insurance premiums worth it. Times 10. (Pretty much literally, if I’ve mathed it out right. 😉 ) Also, if I’m remembering correctly from the time I talked to them last year before they were officially up and running in our area, this company employs their own implementers. This means that if one of them quit/had to move on, WE wouldn’t be the ones scrambling to find a replacement (which is what has lost us essentially two months here recently.)

And, for some non-money/non-therapy good news.. he is finally showing some vested interest in the potty. Probably thanks in large part to the Wintogreen Lifesavers he gets when he pees. *hehe* But really, we’re down to about 1-2 diapers a day because he’ll peel it off still dry and run to the bathroom and pee. Obviously not something you could do out in public where stripping half-naked at a moment’s notice is frowned upon, and there has been no #2 in the potty yet, but as a work in progress, I’ll definitely take it.

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A little good with the bad

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Elliot is so fun to watch as he learns. I know some of these things wouldn’t be a big deal if they were something that just any three and a half year old did, but when attributed to MY three year old, I couldn’t be happier.

First is that he’s getting much better at body parts. This is a new/old skill. He used to be able to point out several, starting about 15 months or so. Around age 2, he lost that ability almost completely. He would still sometimes touch his nose and then your nose, his ear and then your ear, etc. But just answering if you ask him? Nope. Now I can say “Where’s your nose?” or “Elliot, touch ear” and he can do it. Nose, ears, eyes, bellybutton, and often teeth are the ones he’s good at now, and picking up new ones as we work with him.

Second, earlier this week he got off the bus after getting home from school. We stood at the end of the driveway to watch it pull away and turn the corner like we always do. Then he took off running for the house yelling, “‘Oohoo! Yay!” Now, I’d love to say that he meant “woohoo, I get to play with mommy!” but I’m pretty sure he meant “yay after school is lunch!” judging by the way he scooted inside and headed straight for the table.

Third, and most exciting for me, is that he is now occasionally proving that he is hearing and understanding what we’re saying. The most recent example is if I say, “Elliot, do you want shoes off?” he will immediately sit down and whip off those shoes (socks too.. he loves bare feet.)

Now for the bad news.. we’re losing our ABA therapist. Send us some prayers/good luck vibes that we can get a replacement found ASAP, and that Elliot doesn’t slide backwards in the interim.

Overdue Update

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Well, now that it’s been five months since I wrote, I suppose it’s about time for an update.

Elliot has been doing EIBI based on ABA principles for the past four months. We’ve been pressing on with just the one therapist, K, because well.. the demand for people is greater than the supply. Still he’s been rocking on it. Seriously. Despite having no speech therapy over the summer, when he went back to school his speech therapist was thrilled with “how much” he was talking. I don’t want it to give off the wrong impression.. he still spontaneously says next to nothing. However, he’ll imitate almost anything you ask him to say. Mostly just the last word of it right now. We’ve been using it to work on labels, and a bit on requests/demands. If he brings us his cup, we can wait him out with the knowledge that he WILL eventually say “gweek” (drink) or “wawee” (water) for us. If he drags me to the back door and places my hand on the doorknob, I just stare at him expectantly until he says “out-why” (outside). Similarly, I can hold up a dinosaur and he’ll label it “die-o” (dino), or I can point to the letter M and say “What is it?” and he will answer “M.” So far it’s very specific things (about a dozen of his favorite objects, a handful of actions, a couple body parts, and most capital letters), but it’s definite progress. The question “What is it?” seems to get the most consistent results.. if you phrase it differently (“What’s this?” “This is a…”) he often doesn’t answer, and at least for letters, saying “Where’s the M?” doesn’t mean he’ll point to it even though he can answer what that letter is when you question him.

We’ve found he’s pretty darn awesome at matching. Identical objects, identical pictures.. both of those went with flying colors. I remember when we first started trying to have him match non-identical pictures, he didn’t understand what we wanted at first. We had a picture of his red dinosaur and a picture of his green dinosaur. She spread out a few pictures on the ground in front of him (a ball, the red dinosaur, a cup) and held up the green dinosaur photo and said “Match dino.” He looked at the green dinosaur, looked at the ground in front of him, and then got up and went to the shelf where the actual green dinosaur was. I thought that was pretty smart of him, and definitely a match even if not what she had been intending.

He has gotten pretty good at imitating, which is fun. He’s starting to move on to two-step imitation because he’s really good at watching when we say “Do this” and then copying (or trying) what we’re doing. He’ll also copy the intonation that you say something in (if you whisper, he’ll whisper.. if you’re loud, he’ll be loud). Apparently that’s a good thing.. it’s not something that I had ever thought about really. He’s definitely good at imitating sound. We’ve had many a person comment on his rendition of a fire truck, and when we’re out and he hears a background hum (exhaust fan in a bathroom, or appliance from a kitchen, for example), he’ll try to copy that pitch as well.

In OT we’ve dropped down to once every other week at home, and also switched therapists. It was so sad to say goodbye to L, but she had a bad back and just couldn’t do it with him anymore. As he gets more comfortable with you, he also has a tendency to “noodle” for you more and just trust that you’re going to support him. Since he’s ginormous, the combo just wasn’t working. C is really nice and I think it’ll end up being a good thing for him to have someone who can kind of get down around with him more anyway.

And school started up again at the end of August. I was so worried that he’d have forgotten everything when he went back and it would be a big drama, him separating from mommy, etc. Well, the older two started two days before he did. The first day we went to the bus stop to wait for them. He got so excited when he saw the bus pull up. He was ready to climb on the second it stopped and was pretty darn put out that I didn’t let him. We had the open house at his school later that night and as soon as we stepped through the doorway of his school, he took off and made a beeline right for his classroom. He has happily climbed on the bus every morning. I’m going to assume he’s doing just fine there. 🙂 They called me today just to tell me that they had played with shaving cream today and Elliot loved it, really loved it. I was afraid they meant he ate it (most stuff does tend to migrate to his mouth), but no.. he just had a blast playing around in it, and they were tickled by it, so they passed it on. 🙂

Adventures in Coverage

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Over the weekend, I heard from one of our girls that we had lined up as implementers. Her schedule wasn’t as open as she thought and so she wasn’t going to be able to work with us. This bummed me out quite a bit as she was the one that J (the consultant) had already worked with. I was worried that it would mean a delay to us starting things up, when we’re so close. Training is supposed to happen in early May. I e-mailed to let A (Elliot’s service coordinator with the county services office) and J (ABA consultant) know about dropping down to one, and asking if it meant we’d have to be “on hold” until we found another.

Monday, A (service coordinator) e-mails to say that the one implementer leaving shouldn’t have to delay the start time any (YAY!), however… before she can put in the request for the county to cover services, she has to hear from our insurance on whether they cover stuff. Okay then, that’s cool. I never get far with them, figuring I don’t know the right questions to ask or something, so I gave her the info and told her to go ahead and contact them.

Meanwhile, J (the ABA consultant) wrote to say that if Elliot is only eligible for 12 hours of treatment a week and K (the 1 remaining implementer) can do 10 of those, it may be best to not have a second one. She recommends each implementer get 6 hours a week. So, it’s nice to know we’ll still press ahead with just one, however I’m gonna keep looking for one more implementer. No way do I want to be left at the mercy of just one person’s schedule. What if she moves? Gets more hours at her other job? Ramps up her class schedule this fall? Heck, even just goes on vacation? And I know that ultimately what she’s trying to do is get in at the Thompson Center.. who knows if she’d still be available then. Losing 1 when you have 2 sucks, but losing 1 when that 1 is it means you’re at a dead stop. Nope. So… yeah, moving forward with just one while looking for the second to fill in.

Then I heard back from A. She called insurance and they said Elliot did have Autism benefit coverage. However, they were NOT able to tell her what the coverage amount is, or even give a list of in-network vs. out-of-network providers. What the heck? This was definitely one of those times where you just have to laugh at the absurdity because screaming is frowned upon. The INSURANCE people don’t know who or what is covered? Guess it’s not just me that they’re useless for. Ugh. So A was trying to find out from the insurance/billing person from J’s company if they’re in-network and/or if they contacted insurance with Elliot’s info if they’d be able to get better answers.

At this point I wrote her trying to find out if we’d need to be changing providers if J company was out-of-network. I mentioned one company that’s new to town that I’m pretty sure is in-network, but is new, so I don’t know if they’ve worked with the county before. I also was curious if, depending on the coverage, it would possibly mean Elliot could get more than 12 hours/week.

Less than an hour later, A e-mailed all of us (me, J, billing) saying she was just going to go ahead with requesting services from the county for now until we could get some good answers from insurance and then if changes needed to be made later, we’d deal with them then. I do hate change, but I hate waiting even more, so I’m mildly okay with this.

As for the answers to my questions on the hours, it depends on what insurance covers. If they cover more than that, then that’s fab. If they cover it with a copay that we could then request reimbursement for, then the county’s got a quarterly maximum of hours that they can request coverage for, so that might apply. I’m kinda crossing my fingers that we get more than 12. I’m still not sold on the idea of 28, but it seems like that’s a big difference. We can make up some of it ourselves, but doing more than half the recommended hours ourselves is daunting, ya know?

And also, to go along with all of this, I had requested info about adding speech therapy to his stuff at very least for the summer (since the schools say he hasn’t proven he’ll regress with no service from them and _I_ say I don’t want to give him that chance). So A got to talk to our insurance again. Would you believe there are NO in-network providers in the area? None. Yeah, I’m betting they make it real easy to be an in-network provider. Anyway, for out-of-network providers, insurance will cover half of the allowable amount and we would be responsible for the other 50% of it, PLUS the difference between the allowable amount and whatever the provider actually charges. So she said she’d put in a request for the county to cover it. For now we’ll go with once a week, and we may need to back it down to every other week come August (which is not as big a deal to me, as that’s when school will start up and he’ll be having an hour a week there again.)

Elliot therapy update

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After reading, we feel like ABA/EIBI therapy would help Elliot a lot, so we checked around for what we’d need to do to get that started. Basically there’s one person (the consultant) who would kind of oversee the program. They’re licensed especially for this. They would train us, and develop a program specially tailored to Elliot, and meet with all of us (us and the implementers) once or twice a month to go over what progress he’s made and what should be the next step and things like that. The implementers are the people that would actually be working with Elliot the most, doing the therapy and keeping track of data and whatnot.

We had the consultant (J) come out to the house last Monday to observe Elliot. She caught him on a pretty typical day and stayed for a few hours to try and get a good feel for what he’s like, what his strengths/troubles are, etc. We had been e-mailing/calling to try to get implementers. We were hoping for 3, but managed to find and meet with 2 girls that I think will work well. J has worked with one of them before and thought highly of her, and the other gal started doing this in 2007, so I feel pretty comfortable there. So then we were just waiting to see what J recommended as far as how much/how often.

We got the report from her yesterday. She agrees that Elliot would benefit from this, and said that she feels he’d progress best with 28 hours a week (2 hours twice a day.) Oh holy smokes! I keep going back and forth on how I feel about this.. or, more accurately, feeling everything at once. On the one hand, I’m so glad that she really feels this is a way to help our baby get caught up. I’d love to get him talking and able to let us know what he needs and wants (and sees and feels and likes and hears and wonders about.. all the things I get to hear about from my other two. But I’d settle for needs & wants.) On the other hand.. 28 hours? Plus the 14 that he’s gone for school, plus the hour of OT each week.. that’s 43 hours of my baby working on therapy/schooling. That’s more than a full-time job. When’s he supposed to fit in time for just being a kid? A quirky kid, sure, but he still likes to just PLAY.

It won’t matter quite so much in the summer, since the school has decided that he won’t regress so they won’t offer him services over the summer. (That’s another gripe in itself. Obviously I disagree with their assessment since his issues all started OFF with a regression. Hopefully we’ll be able to add in a bit of speech therapy on our own over the summer, even if we have to scale back on OT to do so.)

Beyond the time-consuming matter of it all (which I could likely get used to, especially since it seems like it’s something that if you hit it hard early on, then things are easier later, so it’s not like a “life sentence” of 28 hours a week.. or even any therapy a week), there’s the just plain money aspect of it. I know that the county resources will help.. but only up to 12 hours a week. Now my next step is finding out how we could get more beyond that. I’m not certain whether our insurance will cover it or not (there is a Missouri law, but if the employer is “self-funded” then they don’t have to follow that.) Heck, I’m not even certain how much it costs. We’re planning on starting things up in May, so it’s looking like it’s going to be a busy end-of-April on the phone for me, trying to figure things out.

In other news, since we’ve started the casein-free thing with him, we’ve noticed quite a few things. One is that he’s often down to a regular once-a-day bowel movement instead of the 3-4 he had been at. (I know, you were dying to know it.) Another is that now when he trips or bumps into something, he will actually fuss now. That’s something we hadn’t noticed him NOT doing before. We just figured it didn’t hurt, I guess. It sounds weird to be happy that he’s crying, but it’s much more of a glad he’s registering the hurt feeling now. Also, and I thought it was maybe just me until Joshua said something about it too, but he seems much more willing to attempt to repeat what you say now. AND seems to attend to and understand what YOU are saying much more. It used to be that pretty much the only thing he seemed to understand was if we asked if he wanted to swing… he would run to his swing and wait for us. Now if we ask him to jump, he’ll jump (on the floor or on his trampoline), if we ask if he wants to spin, he’ll head off to find the vestibular “spinny” board. If I ask him if he wants a drink, then he’ll run ahead of me to the kitchen to wait by the sink for his water. He’s even back to spontaneously asking for water (wa-wee). Oh, or his vitamins, which he asks for by making a clicking sound – imagine you’re turning one of those child-proof medicine caps the wrong way. Yeah, it sounds like that. Amuses me, but it’s consistent. And he knows exactly how many he gets and will stand and ask for more until he gets the proper number.

Awareness

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April is Autism Awareness Month. Recently the CDC updated their estimated prevalence stats and reports that about 1 in 88 children have an autism spectrum disorder, or 1 in 54 boys.

Now, I’m not sure what to do with either of these things. Autism Awareness Month? Sounds great, of course it’s a topic of interest to me… but I’m aware of it. I’m aware daily. I struggle with how to make others “aware”… it’s such a varied disorder. It’s not like you can just say that people on the spectrum are x, y, and z or they all need this treatment. Which sort of ties in to my other point.. those numbers up there? You’d think that 1 in 88 would just astound me, but in reality, the only number I need to know is 1. 1 in 10, 1 in a million, makes no difference to me. My sweet little boy is that ONE, and he helps me stay aware of the stuff that matters, all the little things that truly make him “him.”

When I think of Elliot, I think of his grin. I think of his activeness. I think of his love of music. I think of his favorite place to be – in the middle of mommy and daddy, laying on the floor, a hand on each of us. I think of our little foodie who loves to eat – especially spicy or sweet. I think of his unique quirks (like loving to touch stuff with his feet). I think of how amazed I am that a little guy with so few words can still make it so clear that he loves us.

I suppose that’s the kind of awareness that I’d hope others could gain, others who don’t have the daily reminder: People with an autism spectrum disorder may have different perceptions or different struggles than those not on the spectrum… but they’re still PEOPLE. They’ve got feelings and interests and strengths and depth to them too, and it’s worth finding.

February videos

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Going to try to post up videos here so I can watch his progress. They’re passworded, but if you know us, just shoot me an e-mail or something and I’ll give it to ya. 🙂

The first one here is Elliot when he decided that 5 Little Monkeys was just the best song. I was trying to get him to “sing” it too. He won’t often, but sometimes if I stop, he’ll fill in the words.. or his approximations at them rather. This is just him doing the motions for the song though. Still pretty cute. I particularly love his version of calling the doctor.

Feb ’12 – 5 monkeys from Erin K on Vimeo.

This one is Elephant playing possibly his favorite game with his big brother Rowan. Please ignore the state of the house… of course they first trashed the downstairs and THEN decided to be all cute and interactive with each other. *hehe* Elliot loves it when any of us play chase with him (which really just involves him running 5-10 steps away and then giggling/squealing in anticipation for when we’re going to “get” him), but he loves it best when it’s with Rowan. And at the end, you can see him take Rowan down. Despite the four inch difference in height, Elliot’s only one pound lighter than Rowan. Thankfully, they both love the takedown.

Feb ’12 – chasing from Erin K on Vimeo.