Done

We had our final OT session this morning. Emily asked if we wanted to extend services for a month, and I declined. With the holidays coming up and all, I'd really rather have our calendar freed up, and I don't see the benefit to Finn to have one more month of OT.

So we're done - done with early intervention. No more therapy. I am honestly relieved. All the therapists Finn has had have been committed to their professions and passionate about what they do, but I still can't attribute a single gain Finn has made to therapy. (And in all honesty, I'm left scratching my head, wondering how true believers in therapy quantify the benefits of it. I know there are those parents out there who assume that we've just had a bad all-around experience with early intervention - which is true to some degree - and that I'd feel differently about it if only we could get better therapists.) I won't go so far as to say it's all been a complete waste of time; some things you just don't know until you go down the path, and in order to discover that therapy was not the end-all be-all for us, we had to go down the path of early intervention. Do I wish I had trusted myself as a parent a little more? Or that I had had more faith in Finn to progress along his own path? Yes. And I'm sure there will be times in the future, as we fly solo, so to speak, when I will second-guess myself. But I also know that is the nature of parenting - parenting any child.

I am looking forward to a schedule free from therapy appointments, days when we can instead go for long walks, go to the park, and just be.

I assume our Service Coordinator will be closing Finn's file. I don't know what that will mean with regard to transitioning him to the school district when he turns three next summer. I have no idea at this point if I even care. Maybe we'll take another year to just be. Who knows?

Fed Up With Early Intervention

Finn has in-home speech therapy every Wednesday morning at 9:00. Every week his SLP is late - anywhere from 10 to 25 minutes late. Today? Well, today she just didn't show up at all. I waited. And waited. And waited. And posted my frustration on Facebook. And waited some more. All the while growing more and more peeved. It's not as if I don't have other things to do. And I plan things around Finn's therapy. So when she's late, it throws all my planning off, which is frustrating to say the least.

So, in the end, she never showed up this morning. I tried calling her at about 20 to 10, but only got her voice mail, and didn't leave a message. By the time it was a quarter to 10 and she was 45 minutes late, I started thinking, "Well, what if she shows up now? I just won't answer the door!" But she never showed. At a few minutes past 10, I called her number again, leaving a message telling her that I wasn't sure what happened and asking her to call me.

She finally called me back at a little after 6:00 this evening. Know what she said? She said that she had put us down for Thursday mornings from now on. Problem is, she never discussed this with me! So if I had never called her and left a message, would she have just shown up tomorrow morning? I have no idea. Apparently she can't fit us in on Wednesday mornings anymore - something to do with the school year starting . . . I don't know. What does this mean? Have we been displaced by another of her clients? Are we not as important, so we just get booted from the Wednesday morning time slot with no discussion? I have no idea.

And I can't do Thursday mornings. Or rather, I won't. Lilah, my three-going-on-four-year-old, just started attending preschool three mornings a week, which means that Tuesdays and Thursdays are the only days now that I have her home with me. We already do OT on Tuesdays, which means those are mornings that we can't go to the park or do other fun things. In another year, she'll be in kindergarten five days a week, and I'll be damned if I'm going to use up all the days I have left with her doing therapy with Finn - therapy that I'm not even convinced is having any impact on him.

So I called Rebecca back and told her that Thursdays will not work for us, that I need either a Monday morning slot or a Friday morning slot. We'll see where that goes.

The thing is, she's supposed to be THE BEST. She is highly regarded as a SLP. And she does have a great rapport with Finn (which is not to say that I believe he's actually getting a whole lot - or anything - out of ST). I like her as a person. She's good with my kid. And she comes to my house (when she shows up), and I guess she's one of the only SLPs who does in-home therapy in our area. I'm not inclined to dump her and start over with someone else at this point - especially since Regional Center is only covering ST for us through October and then we have to go through our health insurance which will likely make us go across town for ST, which I will not do, so effectively I expect we'll be done with ST come November, until Finn turns 3 anyway and is transitioned to the school district.

Blah. I'm just so fed up with the whole thing - Early Intervention as a whole. If you believe that your kid is making some huge gains as a direct result of EI, then more power to you. But looking back on two years of this crap now, I don't feel that it's been an overall positive experience for us. The benefits - whatever they are - certainly have not outweighed the negatives.

I remember being in the NICU with Finn when somebody first came and talked to me about Early Intervention. I was told that he needed to start therapy as soon as possible, and I remember being bewildered and saying, "As a newborn? He needs therapy as a newborn?" The woman - I guess a social worker from Regional Center - said in this no-nonsense tone, "Don't you want him to be the best he can be? Then yes, he needs to start 'baby school' as soon as possible." That's what they do. They sell it to you like that, playing on your fears and your guilt, and you're led to believe that if you're a good parent, if you want what's best for your child, this is what you'll do: you'll put him in this program from birth that will attempt to normalize him. And even when it becomes a huge imposition on your time, even when your other kids are impacted, you keep going because that's what you're supposed to do, and quitting altogether is too scary because you don't want to look back and feel like you didn't do everything you could do.

Looking back, I wish I would have asked that woman: what exactly is the goal of Early Intervention? What exactly are the benefits I can expect to see? Does therapy guarantee anything for my kid?

Kevin, my thirteen-year-old asked me today, "Mom, why does Finn have therapy? You hate it. And isn't he going to learn how to do all those things anyway, just slower? What's wrong with that?" Astute kid.

Fed up.

Today

Finn had OT this morning. I have to say that Emily really offers more than just OT - she works on a variety of things with him including a little speech, a little PT, a little cognitive therapy. I'm very pleased with how things are going. She is not at all concerned about the fact that Finn has stopped pulling to stand. Like several commenters mentioned, she also said that a lot of babies regress in one area when they're making strides in another area (and I do remember this was the foundation of one of my favorite baby books when Kevin was a tyke, Touchpoints by T. Berry Brazelton).

Anyway, he showed us today that he can pull to standing, he just doesn't seem to want to. So I trust that it'll come back when he's ready.

In other news, we had parent-teacher conferences today, and the twins' kindergarten teacher was telling us about a neighbor of hers and her husband's. They live in a condominium development and there is a young man in his 20s who has Down syndrome, and is living there in a condo on his own. She said he's got lots of support from family, but he's living on his own, he has friends over, he plays his stereo and dances, and he catches the bus every morning to go to work. I almost cried on the spot hearing this!

The possibilities are endless, I tell you!

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.

Beaten Down

After today's session with Finn's new "infant stim" therapist, I've decided to can her. As I posted last week, she was a half hour late the first time she came. I emphasized to her that I have to be out of the house by 12:20 to pick my twins up from kindergarten. Apparently 11:30 on Wednesdays is the only time slot she has available. Fine. If that's the case, then she really needs to be on time if we're going to get anything close to an hour of therapy in, which is what she's contracted for. Well, she was late again today, and this time didn't even bother acknowledging or apologizing for being late. Also, I'm not at all impressed with what she appears to have to offer. She plays with toys on the floor with Finn. Period. We do that already. Emily, the OT, does that. It's overkill. She's not wowing me. So we're done with her; I've already contacted our SC and told her to let her know that she doesn't need to come back. And in all honesty, if this is what "infant stim" is all about, I'll cheerfully do without a replacement.

After the infant stim therapist was here (and I rushed out to get my girls from school), I called Emily, our OT, to get her input. I can call her like that, whenever, to blow off steam and to get her input on therapy, because we have a rapport outside of therapy. We're in the same book club. She's a fellow mom in the neighborhood. Her kids go to the same school my kids go to. We have friends in common. So I called her because I wanted to get her input on canning the infant stim therapist and pushing for speech therapy for Finn. We've thus far been denied ST because here in California, Finn is deemed too young to qualify for one-on-one ST. So Emily was telling me how she began as a therapist in Chicago, and how different EI is there and in other parts of the country, and how in most areas, kids with Ds get ST from birth.

During the course of the conversation, in describing her frustration with how the EI system in California is set up (and I agree, it's screwy), she did the unthinkable: she used the R-word. To me. Today, of all days, the day we're Spreadin' the Word to End the Word. For crying out loud. And she used the word to describe the EI system! Can it get any more ironic than this, folks?

You know what? I kind of lost it after I got off the phone with her. I didn't say anything to her because I was just so stunned. But when I hung up the phone I started crying and shaking - a full on meltdown. Kevin, my 13-year-old, was worried when he found me crying at the kitchen table. "What's wrong, Mom? What's wrong? What happened?" So I told him - this smart, sensitive, compassionate kid who thinks the world of his baby brother, and who is on his own crusade to change people's attitudes - I told him that someone used the R-word in conversation to me and that it just really, really hurts.

I know this sounds rather melodramatic. But it felt like the straw that broke the camel's back. Why am I fighting such a clearly losing battle? It's no use. These words, and these attitudes, they're everywhere. We can't get away from them. It hurts so much, people. I felt just completely drained and defeated.

I like Emily a lot! She's great at what she does, Finn is responding really well to her, she's wonderful. And I know she didn't mean any harm, I know she didn't. She's not a bad person, she's a really kind, wonderful person. But see, even she - a person who makes her living at working with developmentally disabled children - throws that word around without even thinking about it. How are we ever going to change something so insidious?

You know that speech that Kevin wrote? He's going to be giving it in front of the student body and their families at his school this Friday evening. I guess some kids have gotten wind of the subject matter of his speech. Want to know what one kid in one of Kev's classes said to him a few days ago? He said, "Hey, I hear you wrote a speech about a retard." Punk-ass kid . . . why I'd like to . . .

Ugh. Ugh. Ugh. Somebody get me a hole to crawl into.

All that said, I only let a few minutes go by before I knew I had to call Emily out on this. Of course it would have been easier to just let it go, ignore it, pretend I didn't hear it, pretend she didn't say it. But I couldn't. So I sent her this:

Hi Emily -

I want to tell you again how much I appreciate your help and input. I'm so glad that we have you on our team now.

I have to say something, and this is really uncomfortable. On the phone today, when you were talking about how the EI system is set up in California, you said, "That's just RETARDED." Ugh. That word hurts. I'm thinking you probably didn't even realize you said it. But see, that's the problem, it's become so insidious in our language that people don't even realize they're saying it, and they have no idea the people it hurts. Finn is developmentally disabled, and he will be for his whole life. So this is HUGE to me, a really, really big deal. It hurts me, as his mama, when people talk like that. And despite the fact that it's really difficult and uncomfortable to call people out on it, I owe it to Finn to try to change attitudes.

I just wanted to put that out there. No hard feelings. I adore you and am so happy with everything you're doing with Finn.

Lisa

Oh, and here's something my oldest son, Kevin did (he's actually going to be giving this speech at Beechwood school this Friday evening): http://www.youtube.com/watch?v=33IxIdS1vYk

And she did respond and was very apologetic, which I appreciate. It's not apologies I'm after though. It's a change in attitude. And I guess the best I can hope for is that when called out on it, people will at least think before they speak in the future.

Therapy Schmerapy

I think I am stuck in this mindset that the therapists are the enemy. Well, maybe that's a little harsh, but I definitely have this us against them feeling.

So this week we've started with the new therapists. Our new OT, Emily, came on Tuesday morning. It was good. It definitely helps that I have a rapport with Emily already. She was very warm and playful with Finn, and he responded to her very nicely. She played on the floor with him for a while first - and even had him placing balls in a container by himself, which I didn't even know he could do! - and then worked on feeding with him for the second half hour. As far as feeding, Finn is still strictly on purees. He has some serious texture aversions, so we are going to work on that and hopefully get him finger feeding table foods over time.

The other therapist, an "infant stim teacher," came today, and I have to say that she got off on the wrong foot with me from the get-go. It all started with her calling me last night to set up a time to come out and do an initial assessment of Finn to see where he's at and what he needs. She seemed pretty inflexible about when she could come out - and with my having six kids, most of whom are involved in various extracurricular activities, plus staggered school drop-offs and pick-ups every day, it's not like my schedule is wide open. So I finally agreed to have Finn skip his nap today (grrrrr!) because she said that 1:30 this afternoon was the only time she had available. Fine. So this morning she calls to tell me she had a cancellation, could she come over at 11:30 instead? I told her that would be fine but I absolutely had to leave the house by 12:20 to pick up my two kindergartners. So she shows up a half hour late! She said she had trouble finding my house. Okay . . . woulda been nice if she woulda called me. Whatever. So we crammed what was supposed to be an hour-long assessment into 20 minutes - and really, all the "assessment" was was me signing a bunch of forms. Whatever.

So Chris, that's her name, she apparently does "global" therapy - a little PT, a little OT, a little ST, cognition, etc., etc. I'm trying to have an open mind, despite the fact that she got off on the wrong foot with me today, and despite the fact that I think I just resent the whole idea of therapy because of the intrusion, and the fact that it just feels like they're seeing my kid as a collection of problems that needs to be fixed. I know I have a bad attitude.

I do have to give her props, though, for asking about the other kids who might be here during therapy and expressing a desire to include them and have them help. Eun always seemed put off by my other kids and it was always very stressful trying to keep the others occupied and out of the way when she was here working with Finn. I mean, we have a passel of kids, that's our reality.

We are not going to be doing separate PT for the time being, as our SC has been unable to find a PT that can work with my very limited schedule availability. I am totally fine with this. PT is not one of my main concerns right now, and Emily and Chris will both be doing a little bit of PT with Finn anyway.

So there you have it.

IFSP meeting

This morning we had Finn's semi-annual IFSP meeting with our service coordinator. Finn was sporting a nice shiner for the occasion (damn table leg!):

Because, you know, it's important to make a good impression on those social workers.

Anyhoo, it was actually a fairly stress-free meeting, as we did not have to deal with the typical evaluation beforehand since we dumped our PT recently. Instead, our SC just used a written screening tool, where she went down a list - several pages long - and asked us, "Can he do this?" "Does he do that?" and "Is he able to so-and-so?" They were all basically yes and no questions.

What was proposed to us as far as services go - and this is the stressful part for me - was either:

A. A "global" therapy program at a clinic, where he would receive PT, ST, and OT by rotating stations in the same center. This would be a twice weekly program, each day's program consisting of about 3 hours (so a total of about 6 hours per week).

or

B. In-home therapy by three different therapists, each for one hour per week.

Option A is out. The clinic they would want us to go to is about a 30 minute drive from our house, and I just cannot do that for a variety of reasons, among them, having other kids with staggered school pick-ups every day. It's too far, the times would not work, and I have Lilah to think about - I do NOT want to be dragging her around to deal with Finn's therapy. It wouldn't be fair to her. Also, six hours a week seems like an awful lot to me - too much. I just can't do it.

So we've agreed to option B, at least for the time being. Regional Center has agreed to assign Emily as our OT, and we will be given a new PT and an "Infant Stim teacher" who will work on cognition and language development.

Do you see what I've done, though? I've backpedaled on my previous decision to reduce services. We will now be doing weekly therapy not only with just a PT, but with two additional therapists as well.

I have to say straight out that I am still so, so torn on the whole therapy thing. I really am. I just don't know what the right and the wrong are. I do not at all regret that we've spent the last six months only having PT once a month (and none at all since early December) - although I have second-guessed myself plenty. But it's been really, really nice to not have to work our schedule around therapy, to not have that intrusion, and to just let Finn BE. And he's been fine. He's been happy and healthy and inquisitive and explorative. Has he met the goals we set for him at his last IFSP? No. I don't really recall all the goals we set for him (although I don't think there were many), but I do know that one of them was to have him taking at least a few steps by now. He's not. He's still not even pulling up to stand (well, he often will in my lap, but not on furniture or anything). And truly, truly, I am fine with that. I am not in a big hurry for him to walk. I really just don't see the huge benefits of him walking ASAP. He will walk eventually, of that I have no doubt, and that's good enough for me. (This, coming from a pretty high-strung mom!)

That said, there is a part of me, of course, that wonders if we're doing all we can for him. Are we holding him back? Would he progress by leaps and bounds if he had a lot more therapy?

I don't know, I just don't know.

So we've agreed to what will now be three hours of therapy every week, assuming all three therapists can work with my schedule, which is pretty limited (I absolutely cannot do afternoons with all the activities my other kids are involved in). And already, I'm feeling a little resentful about the intrusion it will be, and I'm feeling a lot of guilt for Lilah, because I don't want this to take away from my opportunities to take her to the park and on playdates. She will be starting preschool in the fall, and I don't want to steal these last few months from her.

Gah. This mom stuff is so hard sometimes.

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!

Starting over . . . sort of

Well, Eun has officially been canned. At least by our family. I left our SC a voice mail message last Friday and followed it up with this email yesterday:

Hi Amber -

I left a voice mail message for you on Friday, but wanted to follow up by email to let you know what I'd like to discuss.

I would like to request a new physical therapist. I have a few reasons for this: firstly, I feel that Eun and I stopped seeing eye-to-eye on goals for Finn and how to reach those goals a while back. I am not in agreement that he should be put through exercises that make him cry, while she seems to have a "no pain, no gain" philosophy. I am not knocking her in this regard, I just don't feel that it fits in with what we want for Finn at this point. Additionally, we had agreed to PT sessions once a month. The last time we saw her was the first week of December. She said she would call after the first of the year to schedule Finn's next PT session, and it is now approaching the end of January and we have yet to hear from her. I don't know what's going on, but I have no interest in chasing her down. Because we seem to have a difference of opinion on how to approach Finn's PT anyway, it seems best if we just get a different therapist at this point.

Finn is due for his semi-annual evaluation next month, as well as an IFSP meeting to set new goals. I would like to get a new PT before that so that s/he can evaluate Finn and start fresh. I would appreciate it if you would let Eun know as soon as possible that we won't be using her services anymore, and also if you would get back to me as soon as you are able so that we can discuss this.

Thanks -

She (our SC) called me today and we talked for a little while on the phone. She assured me that it was not a problem to request a new therapist. However, since he's due for evaluation and renewal of his IFSP, and he'll likely qualify for ST and OT now as well as PT, we talked about how to approach that. She wanted to know if I would mind having Eun come out one more time to do an exit eval, and I said I'd rather she not, because at this point I just don't feel comfortable with her. So Amber, our SC, is going to meet with "the team" (whatever that means - I assume it's the powers that be at Regional Center) and decide if it would be better to have one of their staff therapists come out and do a baseline eval of Finn, or if Amber can just do an informal eval when she comes out for our IFSP meeting in a couple of weeks. I'm not sure if one is any better or worse than the other, so I'll leave it up to them how they want to handle evaluating him.

She said that it's not unusual for babies of this age to start doing center-based global therapy, and that there are benefits to it. I've been somewhat resistant to this idea for a few reasons, mainly practicality and convenience. I already spend so much of my days dropping kids off and picking them up from school at staggered times, and I refuse to mess with nap times, so that's a huge consideration for me. However, I guess I shouldn't dismiss it out of hand, so it probably wouldn't hurt to at least tour a couple of these centers, see what they have to offer, and decide if it's something that will work for us. Amber assured me that we are entitled to have in-home therapy until Finn is three, though, so the center-based therapy certainly isn't mandatory, although she did say that for our city, she only has one or two STs who do in-home therapy, and not a whole pool of them to choose from, so that may be an issue.

Anyway, I guess I'm feeling somewhat relieved that we've officially parted ways with Eun, and that we have the ball rolling in another direction now.

Bullseye

Sandra from DS New Mama sent this article to me today: Perfectly Imperfect. Jennifer Graf Groneberg says it so much more eloquently than I've ever been able to manage, and I have to say this article just nails it on the head for me. So much so that I read it with tears running down my face.

Also, this comment left by Tara to my last post:

You definitely need a new PT, but I've been thinking that since you posted about the ankle weights. Even our PT was appalled by that. You might want to axe her now, before the eval, though. Imo, as an OT, it would be helpful for the new PT to do the eval so she can set her own goals. Just a thought.

Also nails it. And it lit a fire under me! It actually never occurred to me to request a new PT before his eval., but that makes complete sense. I put a call in to our Service Coordinator to discuss it with her. Had to leave a message, but hopefully I'll hear back from her early next week. Thanks, Tara!