Anticlimax

And with that, we're done with speech therapy.

Finn has been receiving in-home speech therapy once a week since mid-July - so three and a half months. During that time, no fewer than four sessions were skipped: once because Finn had a cardiology appointment, once because the SLP was on vacation, once because she was sick, and once because . . . well, she just never showed up. In that three and a half months, she was on time maybe three times. All the other times, she was anywhere from ten to twenty-five minutes late, and last week, she showed up fifteen minutes early (which is just as inconvenient and annoying as being late). She often brought along a student/assistant who sat here looking extremely bored each time she was here, fidgeting, sitting with her chin resting on her fist, only interacting with Finn at the SLP's specific direction, and just generally giving the impression that she was just putting in her time.

Here's what speech therapy consisted of for us: playing with toys. A variety of toys that the SLP would bring. Nothing special, though, just toys. Musical toys are a big hit with Finn, so lots of musical toys. Singing songs and doing animated hand movements with the songs.

That's it.

No oral-motor exercises of any kind. And honestly, I'm really not convinced that he'd even be receptive to oral-motor exercises at this point, so my saying this is not a complaint, just an observation.

My point is that nothing - absolutely nothing - happened during three and a half months of speech therapy that we don't already do with Finn.

On the list of positives, the SLP had a really good rapport with Finn. He liked her a lot, and would often crawl into her lap and give her his famous great big hugs.

He is most definitely using more signs now than he was three and a half months ago, and more spoken words (though they are difficult to understand, and I doubt anyone outside of his immediate family would understand the words he says), but I think it's just the natural progression for Finn. He'd be exactly where he is now without the speech therapy.

So I'm disappointed, not because it didn't yield more results, but because I just don't know what the point was. This SLP is supposedly THE BEST. She's very reputable and well known in the community among parents who have children with speech and language delays. I'm not sure, at this point, exactly what criteria makes a SLP good at what they do.

Anyway, we're done now. Her contract with us is up as of today, so this morning was our last session (she showed up twenty-five minutes late, and with her bored assistant). When we said goodbye, that was it - no ceremony or emotion. Not that I expected any.

Sigh.

Speech Eval

We finally had our speech eval this morning. We originally had it scheduled for last week, but Finn got sick so we had to put it off.

Anyway, I liked the SLP a lot. She was very warm and spent close to an hour playing with Finn while asking questions of me and taking notes. When I told her that Finn has never received any speech therapy and that we've had to fight just to get this evaluation, she was appalled. When I told her that the reason we've been given is that Finn is supposedly "not cognitively ready to benefit from speech therapy," she was appalled.

So, basically we've been screwed big time as far as ST goes.

Unfortunately, we can't turn back the clock. Here we are, and all we can do is move forward from here.

She had lots of things to say and observations to make that left me feeling very hopeful. She noted that Finn does mimic certain sounds, he does babble quite a bit, he does follow some verbal cues and commands, and he definitely responds to music, which she said is a wonderful tool in teaching communication. She said, "He's got lots of potential." I told her, "He's got TONS of potential."

Without a doubt, though, he's got severe speech delays. He needs speech therapy. She's going to submit her recommendation to our service coordinator that he begin receiving ST as soon as possible, hopefully with her.

In possible bad news, there is talk that Regional Center is sending letters out to families informing them that they must go through their private health insurance now to receive services, and that Regional Center will only cover what isn't covered by insurance. This could be not so great for us because:

• We would only be authorized to see therapists in our network (presently, neither Emily, our OT, nor Rebecca, this SLP are in our network), and those therapists may not do home visits, plus it would mean starting with therapists we don't know or have any rapport with;
• The co-pays! Sheesh. At 20 bucks a pop . . . sheesh.

But so far we haven't gotten any letter from Regional Center about going through our insurance, so for now I'll just keep my fingers crossed.

Speech!!

I've written before about my frustration with Finn still not receiving speech therapy. Well, that may finally be about to change (finally!).

Emily, our OT, has been of the mind all along that Finn not only needs ST pronto, but is in a position to absolutely benefit from it (despite our SC deeming him "not cognitively ready to benefit from ST"). She sent a letter to our SC a few days ago strongly recommending that Finn receive ST based on the readiness she has observed in him. I was pleased that Emily cared enough to take it upon herself to send the letter, but in all honesty, based on our track record with our SC, I really didn't expect anything to come of it. I figured Amber (SC) would ignore the letter. But I got a call from Amber this morning saying she got Emily's letter and she is arranging for Finn to get a speech eval by a very reputable SLP in our area (I've heard really good things about this therapist).

I'm very pleased!

Speech Therapy and Feeding Issues

A lot of people have asked me why, at 20 months old, Finn doesn't qualify for speech therapy.

I know, it's crazy, huh?

It seems like pretty much everywhere else in the country (from what I've gathered reading other blogs), babies with Ds typically receive ST from birth, addressing oral-motor issues and development before speech begins to emerge. This make complete sense; a SLP is trained and educated to address oral-motor issues and development which, it would seem indisputable, impact both feeding and speech development.

Here in California, though - or at least in my part of California (as I understand it, EI varies widely even from county to county - why, oh, why isn't there a universal standard?), feeding issues are addressed by occupational therapy. And Finn's OT actually is working with us to address Finn's feeding issues (he is still on purees only; he doesn't seem to know how to chew; he has pretty serious texture aversions and a highly active gag reflex). She's good, and very patient, and seems to have all kinds of tricks up her sleeve. However, it's not really her area of expertise. She's a trained OT, originally from Chicago, where feeding issues are addressed by SLPs. It was only when she moved to California a handful of years ago that she began addressing feeding issues, because that's one of the things OTs here are expected to address.

What I was told by our service coordinator a long time ago was that Finn wouldn't even be evaluated for ST until he was 18 months old. So when we had his last IFSP meeting and eval last month when he was 19 months, he was deemed not ready for ST because he's apparently "not cognitively ready to benefit" from ST. Despite the fact that all over the IFSP paperwork that came out of that meeting, it says, "Mom's main concerns are speech and feeding."

Even Emily, our OT, wants to see him receive ST . . . now. And if I put up a big fight, I might be able to get it for him. Maybe. But part of my problem currently, too, is that there are no SLPs available to do in-home therapy right now in my area, and with the chaotic and very full schedule I already have with all of the kids, it's not feasible for me to travel across town for center-based therapy. When my other kids are out of school this summer and our schedule opens up, it might be more feasible, although I'd really rather receive in-home therapy. But anyway, I do plan on going after ST for Finn more aggressively this summer.

Oral Motor Myths of Down Syndrome

There is a really good article here (scroll down to The Oral Motor Myths of Down Syndrome; it's a PDF file, so I can't link directly to it here). It explains in excellent and logical detail the progression of events that likely leads to the tongue protrusion typically seen in Down syndrome, as well as the effects of this on speech development. In a nutshell, it's apparently a circular process: although all babies, including those with Ds, are born nose-breathers, due to low muscle tone, babies with Ds typically have a weak suck at birth. This leads to predictable feeding patterns, which results in fluid buildup in the middle ear, which results in chronic congestion and often respiratory illness, which leads to mouth-breathing and the relaxed and protruding tongue typically seen with Ds, which results in a high, narrow palate, which results in both feeding and speech problems. According to the article, much of this can be prevented by vigilant feeding practices from birth.

The article talks mostly about bottle feeding, but does also touch on breast feeding, and how positioning a baby correctly while feeding, either by bottle or breast, can prevent the fluid buildup in the middle ear which leads to all these other issues.

Except for a short time while he was in the NICU, Finn has been exclusively breast fed. I've always operated under the belief, or at least hope, that this was helping him to develop the oral-facial muscles necessary to facilitate speech development. However, at 20+ months old, and having been breast fed his whole life thus far, although he babbles plenty, he has no discernible words. This article made me look back and examine the progression of events for Finn:

• Due to major intestinal surgery at birth, he was not allowed to take any nutrition by mouth until he was more than a week old.
• Because of this, we had great difficulty establishing breast feeding (low muscle tone was probably a factor as well, although Finn has always had relatively good tone).
• Because of this, he was bottle-fed expressed breast milk for a while; because of his weak suck (due to possible low tone and certainly trauma from the major surgery he underwent, as well as oral aversions from being intubated), he was given a fast-flow nipple, which likely contributed to fluid buildup in the middle ear.
• Although we were able to get him off bottles and exclusively nursing in a relatively short time, we faced a lot of difficulty in this endeavor, and therefore probably did not use optimal positioning for feeding, thus also contributing to fluid build-up in the middle ear.
• Finn definitely became chronically congested; I remember very well the constant snorting sound he would make. He also suffered from chronic upper respiratory infections for many months during his first year.
• The congestion seemed to resolve almost immediately when he had tubes placed in his ears at 11 months old. However, by this time he was already a chronic mouth-breather and even now has the relaxed, protruding tongue, and the high, narrow palate (which I confirmed this morning by feeling for myself).

So. In a way, I am fascinated by all of this, and glad that we can clearly see what happened. But I also feel sad, because what's done is done, and how to undo it now? It makes me sad that this could have been prevented, at least to a degree, but I didn't have any idea at all.

I have no doubt that this is where a SLP comes into play. However, unfortunately, Finn has been deemed not qualified for ST at this time, because he's apparently "not cognitively ready" for it. I'm not at all happy about this, nor do I agree with it, but I also am not in a position to fight it right now. This summer, I will, though.

***

In other news, for the last couple of days, Finn is no longer pulling to stand. Even when I put him in a standing position up against something, he balks. I don't know what to think about this. Trying not to worry too much.

Therapy

Things are looking up.

There's this gal who recently joined my book club. She lives in my neighborhood and has twin boys who attend the same school my kids attend. I've seen her around the neighborhood here and there for all the years we've lived here, but only started to get to know her when she joined the book club I'm in a couple months ago, and I liked her right off. We seem very like-minded in a lot of ways, and I felt like we hit it off nicely.

Well, guess what. She's an occupational therapist. I had heard this through the grapevine, although I wasn't sure just what kind of OT she is. But I took a small leap a few days ago and sent her an email telling her a little about Finn and asking if I could pick her brain about therapy, explaining to her all my conflicting feelings about it, what our experience with therapy has been, etc., etc. And I told her that we're kind of at a place right now where we're making some changes to Finn's therapy protocol, and that we have an upcoming IFSP meeting. I told her that I'd sure appreciate some guidance from someone in the know. She was so thrilled that I asked her (which was a relief because I really felt like I was imposing, but she went on and on about how she loves her job and really likes helping friends and acquaintances navigate the system).

She and I talked on the phone this weekend for a long time and her philosophy and approach seem to be in line with what I want for Finn. For instance, she explained to me how beneficial it is for him to crawl for a long period of time rather than being pushed to walk as soon as possible, because as a crawler (he's been crawling since 10 - 11 months but is nowhere near walking), he's developing and strengthening all kinds of muscle groups and fine motor skills that are very important for long-term development. With Eun, it really felt like she was just intent on getting him to the next big milestone, whatever that took. Granted, Eun was a PT, and Emily is an OT, and Emily told me that PTs and OTs do tend to have very different philosophies and approaches (which makes me wonder how a team of therapists with different philosophies and approaches can ever provide a cohesive therapy "package").

Anyway, she made me feel inspired and hopeful about the possibility of having a positive, beneficial therapy experience. And she offered to be Finn's new OT! She works with the Regional Center that provides Finn's services, and she said I can request her and that she has room in her caseload.

We still have to decide what we're going to do about PT and ST. I've been told now by our SC, by Eun previously, and now by Emily that speech therapists who do in-home therapy in our area are almost nil, so I'm concerned about that because I do think that Finn could benefit from ST at this point, and with Lilah still home with me and multiple school drop-offs and pick-ups for the other kids every day, plus naps for the two youngest, I'm just not sure how feasible it would be to take Finn somewhere for ST at this point. I also don't know what we're going to do about PT right now. I'm almost inclined to do without PT for the next few months, focus on OT, and maybe do clinic-based therapy in the fall when Lilah starts preschool.

Anyway, I'm feeling very positive about getting started with Emily!